2018 KARRN Conference

Lets Talk About Sex Pro Tips for Positive Sexual Health

Jason Jones Liz Schmidt Lindsey Catherine Mullis Introduction to Jason Jones Introduction to Liz Schmidt, MOT, OTR/L Introduction to Lindsey Mullis, MS

“The Sexual rights of all persons must be respected, protected, and fulfilled.”

World Health Organization The right to love is not equal, can be restricted, and not respected • Romantic relationships have both personal and social functions • Many adults with IDD hold the expectation that such a relationship will form part of their life, but stable intimate relationships are elusive for many people with IDD • Research suggests that an absence of significant social relationships may be as detrimental to health as smoking, high blood pressure, and obesity

Gilmore & Cuskelly, (2014); House, Landis, & Umberson, (1988) Barriers Faced • Negative Views • Self • Others Perceptions • Restrictions • Privacy • Expressions • Options & Opportunities • Lack of Education • Individuals with IDD • Caregivers • Family & Paid Supports Benefits to romantic relationships

• Individuals with possess same needs and desires • “Impairments in the physical and mental capacities may alter day to day functioning but they do not eliminate the basic of human drives and desires for love, affection, and intimacy Milligan & Newfeldt (2001) • Relationships resemble expected relationships of those without disabilities

Gilmore & Cuskelly, 2014; Hall et al., 2005; Kelly, 2009; Lafferty, 2013; Milligan & Newfledt, 2001; Rushbrooke et al., 2014b; Jones et al., 2010; McClelland et al., 2012; Morentin, Arias, Jenaro, Rodriguez-Mayoral, & McCarthy, 2008; Munro, 2011; Rushbrooke et al., 2014b; Ward, Bosek, & Trimble, 2010

Influences on Attitudes About Sexuality

• Family/Culture/Religion • Media • Friends/Community at large • Books & magazines • Direct Education • TV, Movies • Songs/Performances • Social Networks • Internet • Social influences create confusion (google images)

Rehab Providers Role in Promoting Sexuality

Physical Therapy? • Maintain, restore, or improvement movement • Enable optimal performance • Enhance health, well-being, and quality of life

All relate to engagement in sexual activity! Rehab Providers Role in Promoting Sexuality

Occupational Therapy? • Health promotion • Remediation • Modification

Sexual activity is an ADL! Rehab Providers Role in Promoting Sexuality

Speech and Language Pathology? • Communication skills • Relationship-building skills

Includes an understanding of relationships and sexual health! Rehab Providers Role in Promoting Sexuality

Nursing? Physicians? • Promote sexual health • Includes preventing STIs and unwanted • Includes pain and bowel & bladder management

Also includes emotional, intellectual, and social aspects of sexual being that impact quality of life! Sexuality education

How to do it: • Informal opportunities for What to cover: teaching “in the moment” • Body parts/functions • Planned teaching • Social rules/behavior expectations opportunities • Types of relationships • Formal Sexuality Education classes • Exploitation risk reduction skills • for Learning strategies

Research shows . . . Positive outcomes from Sexuality Education: Decreases in: • Abuse • Interpersonal Violence • Poor Sexual Health Increases in: • Social Opportunity • Healthy Relationship Building

(Hamilton & Thorn ) Body Parts/Functions

• Correct terminology/identification • Formal – , penis, , • Cute – lady parts, vajayjay, ding-a-ling • Slang – cock, pussy • Functioning – “plumbing lessons” • Hygiene – the more independent the less risk for sexual exploitation • Sexual Health - safe and unsafe sexual practices (Sexually Transmitted Infections) • Sexual Pleasure – acknowledge good feeling and that is private • Responsibilities/Boundaries – public and private rules for self and others The SCI Population

• In the United States, most spinal cord injuries occur to individuals between the ages of 16-45. • Of those injured, the vast majority are male. Similar statistics are found worldwide. • The most common causes of injury include motor vehicle accidents, violence, sports-related injuries, and falls. • It has been assumed the gender disparity is due to more men than women engaging risk-taking behavior that leads to injury. The actual reason for the disparity is unknown. Sexual Function vs. Sexual Rehabilitation

Two focuses of sexuality after a SCI 1. The Sexual Function area is the maximization and optimization of sexual function after SCI. 2. The next is adjustment or adaptation (to the new self) . 3. First, “how far back can I come,”… then “I’m here, now what?” Societal Changes - Sex & SCI • In many ways, societal changes over the last 20 years, combined with advancements in technology and pharmaceuticals, have improved adjustments to sexual life after SCI. Research

• Kim D. Anderson, Ph.D., presented a study “to determine what areas of functional recovery the SCI population would most like researchers to address in order to have a positive effect on their quality of life…”. • Sexual function was the highest priority among individuals with paraplegia, and second highest priority, after regaining arm and hand function, among individuals with quadriplegia. How do rehab professionals bring it up?

• Ex – PLISSIT model 1. Permission giving stage 2. Limited information stage 3. Specific suggestions stage 4. Intensive treatment stage • Extended: Includes reviewing and reflecting upon each part of the process Communication

• Always use an individualized approach!! • Encourage reflection afterwards: • What went well? • What didn’t? Evaluation Considerations

• Cultural responsive • Implicit biases • Avoid making assumptions about WHETHER OR NOT someone engages in sexual activity and HOW they do! Modifications

• Sexual devices • Sensation • The biggest sexual organ is your brain! • Erogenous zones in your areas of sensation: • Ears, neck, lips • What else? Modifications

• Positioning Modifications

• Additional lubrication • Certain diseases/illnesses/injuries prevent the body from creating enough natural lubrication • Education is key! • Bowel and bladder management Autonomic Dysreflexia

• A syndrome in which there is a sudden onset of excessively high blood pressure • Most common for injuries below T6 Autonomic Dysreflexia Cont. • Preventing AD: • Voiding bladder prior to engaging in sexual activity • Pain management • Proper bowel care to avoid stool impaction • Proper skin care to avoid bedsores and infections • In the event of AD, educate your clients to: • Sit straight up, • Raise head to look forward, • Lower legs Guardian vs. Individual rights

Did you know that guardians CAN NOT . . . . • Consent to an abortion, or sterilization • Terminate an individual’s parental rights • Prohibit an individual from registering to vote or casting a ballot • Prohibit an individual from applying for or obtaining a driver’s license • Prohibit or divorce of an individual As a Professional, you Need to . . .

• Acknowledge sexuality and individuality • Individuals will require access to accurate information • In a universal way to help them understand • Individuals will require ongoing supports • Don’t be afraid to discuss with parents • Supports require collaborative approach

Let’s Practice! 1. Everyone get into groups 2. Review the case provided and identify: • One question you would ask the client to follow up about safe sexual practices • One strategy you could provide the client to promote safe sexual practices Case Study

You are in an inpatient rehabilitation facility with a 26-year old male who obtained a T6 6-weeks ago due to a motor vehicle accident. He wants to know what he can do to return to engagement in sexual activity with his girlfriend. References

1. McCabe, M., & Cumins, R. (1996). The Sexual Knowledge, Experience, Feelings and Needs of People with Mild Intellectual . Division on Autism and Developmental Disabilities, 31(1), 13-21.

2. Galea, J., Butler, J., Iacono, T., & Leighton, D. (2004). The assessment of sexual knowledge in people with . Journal of Intellectual and , 29(4), 350-365. doi:10.1080/13668250400014517

3. Brown-Lavoie, S., M., Viecilli, M., A., & Weiss, J., A., (2014). Sexual Knowledge and Victimization of Adults with Autism Spectrum Disorders. Journal of Autism Development, 44, 2185-2196.

4. Ward, K., M., Bosek, R., L., Trimble, E., L., (2010). Romantic Relationships and Interpersonal Violence Among Adults with Developmental Disabilities. Intellectual and Developmental Disabilities, 48(2), 89-98.

5. Ballan, M., S., (2012). Parental Perspectives of Communication about Sexuality in Families of Children with Disabilities, Journal of Autism Development, (42), 676-684.

6. Lesseliers, J., & Van Hove, G., (2002). Barriers to the Development of Intimate Relationships and the Expression of Sexuality Among People with Developmental Disability: Their Perceptions. Research & Practice for Persons with Severe Disabilities, 27(1), 69-81.

7. Sexuality and Intellectual Disability. American Association on Intellectual and Developmental Disabilities. Retrieved from http://aaidd.org/content_198.cfm Lyden, Martin. (2007). Assessment of sexual consent capacity. Sexuality and Disability, 25(1). 3-20.

8. AAIDD Policy Position Statement (www.aaidd.org)

9. Sullivan P, Knutson J. Maltreatment and disabilities: a population-based epidemiological study. Child Abuse & Neglect. 2000;24(10):1257-1273. doi:10.1016/s0145-2134(00)00190-3

10. Spencer N. Disabling conditions and registration for child abuse and neglect: a population-based study. PEDIATRICS. 2005;116(3):609-613. doi:10.1542/peds.2004-1882.

11. Jones L, Bellis M, Wood S, Hughes K, McCoy E, Eckley L, Bates G, Mikton C, Shakespeare T, Officer A. Prevalence and risk of violence against children with disabilities: a systematic review and meta- analysis of observational studies. The Lancet. 2012;380(9845):899-907. doi:10.1016/s0140-6736(12)60692-8.

12. McDaniels B, Fleming A. Sexuality education and intellectual disability: time to address the challenge. Sexuality and Disability. 2016;34(2):215-225. doi:10.1007/s11195-016-9427-y.

13. McGillivray J. Level of knowledge and risk of contracting HIV/AIDS amongst young adults with mild/moderate intellectual disability. Journal of Applied Research in Intellectual Disabilities. 1999;12(2):113-126. doi:10.1111/j.1468-3148.1999.tb00070.x.

14. Conod, L., Servais, L., 2007. Sexual life in subjects with intellectual disability. Sexuality and intellectual disability, 50(2), 230-238.

15. McCabe, M., Schreck, A., (1992). Before : an evaluation of the sexual knowledge, experience, feelings and needs of people with mild intellectual disabilities. Journal of Intellectual and Developmental Disability, 18(2), 75-82. References 1. Greenwood, N., W., & Wilkinson, J. (2013). Sexual and care for women with intellectual disabilities: A primary care perspective. International Journal of Family Medicine, (2013), 1-8. 2. Christopher Trenholm, et al., Impacts of Four Title V, Section 510 Education Programs, Final Report April 2007 (Washington, DC.: Mathematica Policy Research, Inc. for U.S. Department of Health and Human Services, 2007). 3. Kristin Underhill, Paul Montgomery, and Don Operario, " only programmes to prevent HIV infection in high income countries: systematic review," British Medical Journal Online (July 2007), accessed 13 August 2007, http://bmj.com/cgi/content/full/335/7613/248 4. Douglas Kirby, Emerging Answers 2007: Research Findings on Programs to Reduce Teen and Sexually Transmitted Diseases (Washington, DC: The National Campaign to Prevent Teen and Unplanned Pregnancy, 2007). 5. Doug Kirby, Emerging Answers: Research Findings on Programs to Reduce Teen Pregnancy (Washington: The National Campaign to Prevent Teen Pregnancy, May 2001). 6. National Sexuality Education Standards Core Content And Skills K-12. Future of Sex Education Initiative; 2012. Available at: http://www.futureofsexed.org/documents/josh-fose- standards-web.pdf. Accessed September 20, 2017. 7. Aunos, M., & Feldman, M., A. (2002). Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disability, 15(4), 285-296. 8. Evans, D., S., McGuire, B., E., Healy, E., Carley, S., N. (2009). Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives. Journal of Intellectual Disability Research, 53(11), 913-921. 9. Lafferty, A., McConkey, R., Simpson, A. (2012). Reducing the barriers to relationships and sexuality education for persons with intellectual disabilities. Journal of Intellectual Disabilities, 16(1), 29-43. 10. Pownall, J., D., Jahoda, A., & Hastings, R., P. (2012). Sexuality and sex education of adolescents with intellectual disability: Mothers’ attitudes, experiences, and support needs. Intellectual and Developmental Disabilities, 50(2), 140-154. 11. American Occupational Therapy Association (2014) Occupational therapy practice framework: Domain and process (3rd ed ), American Journal of Occupational Therapy, 68(Suppl 1), S1– S48 http://dx doi org/10 5014/ajot 2014 682006 12. Swanton, J. (2017). Sexual health education: Developing and implementing a curriculum for adolescentsand young adults with intellectual disabilities. OT Practice, 22(19), 14–17. 13. Gontijo, D., T., de Sena e Vascolncelos, A., C., Monteiro, R., J., S., Facundes, V., L., D., de Fatima Cordeiro Trajana, M., de Lima, L., S., 2015. Occupational Therapy and Sexual and Reproductive Health Promotion in Adolescence: A Case STudy. Occupational Therapy International, 23, 19-28. 14. Hattjar, B. (Ed). (2012). Sexuality and occupational therapy: Strategies for persons with disabilities. Bethesda, MD: AOTA Press Thank you!

Please reach out if you have additional questions for us! • Lindsey Mullis • [email protected] • Jason Jones: • [email protected] • Liz Schmidt • [email protected]