1. PATIENT ADVOCACY AND COLLABORATION: A STORY OF PROVIDERS AND AFFECTED PEOPLE WORKING TOGETHER TO IMPROVE CARE Social Work in Healthcare Conference 25 April 2016 Emily Haddad LCSWElena Hight Clinical Social WorkerIntersex Advocate Department of UrologyPhD Sociology candidate OU Medical CenterInterAct emily-haddad@ouhsc.eduenhight@gmail.com

2. Medical social work contributes to the team with the mission of enhancing the quality of life for patients, supporting their interactions with the healthcare system, and advocating for the patient and family’s self- competence and efficacy.

3. EDUCATIONAL HISTORY AND TRAINING EMILY HADDAD LCSW University of Michigan, Masters in Social Work  Toledo Children’s Hospital, NICU  The Hospital for Sick Children, Toronto Ontario, Pediatric Urology, Multidisciplinary Urogenital Clinic (MUG)  Graduate Student Instructor, Dept. of Sociology, “Introduction to Sociology: Sex, Gender Sport” University of Vermont, BA in Anthropology and Sociology  World Learning Institute, Amsterdam the Netherlands, Gender Identity and Sexuality Program  Teacher’s Assistant, Department of Sociology, “Introduction to Sociology” and “Race Relations”

4. MODEL OF INTERVENTION  Interdisciplinary clinic with MD/RN/NP: education, therapeutic support  Family therapy/ individual therapy/ group therapy  Referral to national support groups and resources  Surgical decision making support: education  Inpatient support (work with Child Life Specialist and Psychology)  Care Coordination with other providers/ case management  School advocacy (education, IEP and 504 plan, behavioral/emotional treatment plans)  Referral and collaboration with in-home behavioral specialist or outpatient mental health providers in families area

5. EDUCATIONAL HISTORY AND ACTIVISM ELENA HIGHT Washington University, St. Louis, BA in Theater Phd in Sociology candidate at University of Wisconsin, Madison Education and Outreach  Unitarian Universalist  OU, Healthcare Sciences  OU, School of Social Work, Social Work in Health Care  UCO, Department of Sociology, Sociology of Sex and Gender  UCO, Institute of Hope  InterAct

6. DIFFERENCES OF SEX DEVELOPMENT/ INTERSEX DSD: Medical term for group of congenital diagnoses where there is variation of the gonads, genitalia, sex chromosomes and hormone function that is not of typical male/female development INTERSEX as Identity  Hermaphrodite and pseudohermaphrodite as harmful  Cultural implications in healthcare service  1:2,000 live births= DSD/Intersex SUCCEED Clinic: Pediatric urology, pediatric and adult endocrinology, genetics, social work, psychiatry, reproductive endocrinology

7. CONSENSUS STATEMENT ON DSD  Published in 2006  Pediatric Endocrine Society and European Society for Pediatrics and Advocates  Called for Interdisciplinary Teams: Endocrinology, Genetics and Genetic Counseling, Gynecology, Urology, Biomedical Ethics, Psychiatry/ Psychology, Child Life Specialist, Nursing AND SOCIAL WORK

8. DSD/ INTERSEX RESOURCES  www.succeed-clinic.org  http://www.aboutkidshealth.ca/EN/HOWTHEBODYWORKS/SEXDE VELOPMENTANOVERVIEW/Pages/default.aspx  Non profit clearing house for DSD information: www.accordalliance.org  National support group for individuals with a DSD and families: www.aisdsd.org  Educational support organization: www.dsdfamilies.org  Educational and support group for individuals with CAH and families: www.cares.org

9. “BELOW THE WAIST AND UNDER THE RADAR”  Intimacy and privacy: Secrecy and shame  Sexual health and identity  Fertility and family planning  Body image and self esteem  Medicalization (genital and breast exams)  Isolation, “you are very rare”  Greif and loss (gender re-assignment)  Depression, Anxiety, PTSD

10. PEER SUPPORT AND SUPPORT GROUPS Intimacy in childhood friendships=====  reduce isolation and promote sexual health in adulthood EDUCATION AND FULL INFORMED CONSENT Helplessness and powerlessness===  reduce decisional regret; promote resiliency PATIENT ADVOCACY WITH HEALTH CARE PROVIDERS Hierarchal dynamic in medicine======  improving trust and open communication

11. WHAT IS IT LIKE TO BE INTERSEX?

12. INTERSEX STORIES Bo Laurent/ Cheryl Chase  Founder of the Intersex Society of North America Founder of the Intersex Society of North America Jim Ambrose  InterAct contributor InterAct contributor

13. ELENA’S SHARES HER EXPERIENCE, RESILIENCE AND HOPE

14. CONVERSATION BETWEEN SOCIAL WORKER AND AFFECTED PERSON Emily: After sharing your story, what is the most important aspect of your care that could have been improved?- communication, informed consent Elena: What do you think has been your biggest challenge in your role?– intimate discussion, explicit Elena: In your time with DSD clinic, what are positive and negative ways that the team may communicate with the child? What ways can the Social Worker intervene to support the patient and family? Emily: What type of support do you think may have been helpful to you in regards to learning about your diagnosis, fertility, sexual health, identity, adjustment to dx? Elena: How would your team today, attend to a case like mine: diagnosis at age 12, surgery at age 15?- medical journal Emily: What type of language and interventions did you find the most helpful or harmful? Elena and Emily: What do you think are the barriers to medical providers discussing the variation in sex anatomy, sexual pleasure, identities, sexual activities? Elena and Emily: How has your experience going to conferences and talking to intersex individuals influenced your practice/ advocacy?

15. QUESTIONS AND COMMENTS THANKS FOR LISTENING