Aya Roth, Director – Israel Elwyn Supported Living Centers IAJVS Conference, Houston, TX

1. ESTABLISHING AN ACCESSIBLE WOMEN’S WELLNESS CENTER AT ISRAEL ELWYN’S SUPPORTED LIVING CENTERS: VISION VS. REALITY Aya Roth, Director – Israel Elwyn Supported Living Centers IAJVS Conference, Houston, TX April 2012

2. ISRAEL ELWYN (IE) • Founded in 1984 at initiative of Jerusalem Municipality, Israeli government and US-based Elwyn Inc. • Non profit organization registered in Israel (Amuta) • Serves over 2,800 children and adults with disabilities - Jewish, Muslim and Christian alike • Instrumental in influencing legislature, services and fostering self advocacy of people with disabilities

3. ISRAEL ELWYN’S VISION Israel Elwyn foresees a society in which people with disabilities will be citizens with equal rights; a society in which we all aspire to determine our own future and way of life.

4. ISRAEL ELWYN’S SERVICES • Early Intervention • Preschools and Special Education • Supported Living • Occupational Training • Social Enterprises • Supported Employment • Transitional School to Work Programs • Vocational Training/Job Placement • Retiree Programs

5. IE’S RESIDENTIAL CENTERS • Located in Jerusalem on IE’s campus • Three separate buildings, divided into apartment-like sections • Each building supports 80 individuals with intellectual disabilities, all requiring supports in most activities of daily living • Nearly one third of residents use wheelchairs • All have at least one significant support need along with their intellectual disability (eg. Aging, behaviors, sensory or physical impairment, health issues, etc.) • Nearly half of residents are women • Average age: over 50 • Additional on-site services: employment, recreational programs, nutritional center, general health clinic

6. A brief video… • Movie

7. STATUS QUO: HEALTH SERVICES • National Health Care Law enacted in 1993 • Each citizen pays Health Tax, entitling him/her to receive basic health services • Citizens choose to receive services from one of the four HMOs • All HMOs provide similar services, no one can be excluded for preexisting conditions

8. STATUS QUO: HEALTH SERVICES FOR WOMEN Routine tests recommended for adults: • Breast exams by a qualified surgeon • Pelvic exam, including Pap smear • Internal and pelvic ultrasounds

9. JERUSALEM: HMO SERVICES FOR WOMEN • Two women’s health clinics, operated by Clalit, the largest HMO in Israel • Most women in Supported Living Centers are members of Clalit • Clinics are located in wheelchair accessible buildings

10. JERUSALEM: HMO SERVICES FOR WOMEN(cont’d) • Examination tables unsuitable for short women or those unable to independently get on table • Table height not adjustable • No lifting system enabling women in wheelchairs to reach table with assistance of care provider • Examination rooms uninviting • Cold temperature, sterile in appearance Clinic equipment inaccessible for women with physical and intellectual disabilities:

11. JERUSALEM: HMO SERVICES FOR WOMEN(cont’d) • Medical personnel change from visit to visit, lack skills to foster cooperation with women with disabilities • Time allotted for routine visits: 10 minutes • Ultrasounds performed separately from routine visits • Different personnel • Require additional waiting for an appointment Result: Visits uncomfortable, uninviting, stressful

12. JERUSALEM: HMO SERVICES FOR WOMEN(cont’d) Prior to establishment of IE’s Women’s Wellbeing Center: • 40% of visits cancelled due to lack of cooperation from women or for technical reasons • No Pap smears or manual breast exams • Few internal exams • Few mammograms due to Israel’s lack of adapted equipment for women in wheelchairs • Few solutions for PMS, contraception, menopause

13. CARE FOR WOMEN WITH DISABILITIES Paradox: Women with disabilities are sent for numerous tests but suffer from under-diagnosis and little actual testing

14. OUR DILEMMA In view of the emphasis on inclusion in IE’s vision: Establish a wellness clinic for women with disabilities Their inclusion in clinics that exist in the community vs.

15. ARGUMENTS AGAINST ONSITE CLINIC • Isolation of women living in Supported Living Centers from the community to which they naturally belong • Relinquish opportunities for medical personnel in community to meet with women with disabilities • Release HMO from professional and moral responsibility towards patients • High expense for private medical care • Create “bubble” of knowhow not shared with community’s medical profession, thereby prolonging status quo

16. ARGUMENTS FOR ONSITE CLINIC • Provide accessible and efficient medical care that will contribute to health and wellbeing of women living in IE’s Supported Living Centers • Financial savings on transportation and personnel required when residents travel out of the Centers • Make examination experience more pleasant for women

17. Contact with Clalit HMO: • Following our explanation of project, they agreed to their somewhat symbolic financial participation • Cooperation with HMO significant to IE • Beyond their financial participation, we believe this to be symbolic of their understanding that they cannot deny medical responsibility • Establishes a basis for possible future changes in HMO’s own services for women PROCESS OF ESTABLISHING THE CLINIC

18. PROCESS OF ESTABLISHING THE CLINIC(cont’d) Building: • Clinic located on Supported Living Centers campus • Accessible one storey building • Equipment placed in clinic with assistance of expert on ergonomics • Emphasis on privacy and accessibility

19. PROCESS OF ESTABLISHING THE CLINIC: ADAPTED EQUIPMENT • Examination table: • At wheelchair height • Adjustable for patient’s comfort and examiner’s effectiveness • Lifting system: • Safe, easy transfer for patient from wheelchair to table • No special skills required for operation • Ultrasound: • Onsite location allows immediate availability • No need for transportation, lengthy delay for appointment, involvement of additional staff, patient anxiety

20. PROCESS OF ESTABLISHING THE CLINIC: AUXILIARY EQUIPMENT Snoezelen (multi-sensory) projector • Distracts patient during examination • Reduces anxiety level • Research of use in dental clinics shows reduced anxiety and pain

21. PROCESS OF ESTABLISHING THE CLINIC: PERSONNEL • Gynecologist recruited • To ensure sufficient treatment for each patient, doctor is paid per hour – not per patient as in Clalit HMO clinics • Experienced IE Supported Living Centers nurse given additional relevant training

22. PROCESS OF ESTABLISHING THE CLINIC: COMMUNITY INCLUSION • Prevent creation of a “bubble” • Enhance possibility for future accessibility of community clinics for women with disabilities with the help of this knowledge Management of Supported Living Centers and of Women’s Wellbeing Center are committed to ensuring knowledge acquired is shared:

23. PROCESS OF ESTABLISHING THE CLINIC: COMMUNITY INCLUSION • Purpose: share knowledge in order to influence Ministry of Health regulations on osteoporosis • Age for beginning testing • Criteria for treatment • Diagnosis of bone density tests • Etc. May 2011: IE invited government professionals to a seminar on osteoporosis in women with intellectual disabilities

24. STATUS QUO Women’s Wellbeing Center established in May 2009 • Since then, each female resident examined at least once a year, regardless of health • Gynecologist present every 2 weeks for 2 hours; sees 5-6 women • Appointments made 1 week in advance to enable physical and emotional preparation • Onsite location and familiarity with staff prevent anxiety previously built up during trip to external clinic • No appointments cancelled • Women can “pause” the examination for up to 2 hours or return after 2 weeks

25. STATUS QUO(cont’d) • Patients have time before examination to become familiar with clinic and equipment • Routine visit includes breast exam, pelvic exam, internal or pelvic ultrasound, Pap smear (if indicated) • Time for more in depth discussion with patient and/or family member and/or staff • Rethinking of traditional hormonal contraception treatment according to individualized criteria • Depo Provera no longer automatic for fertile women known to be likely to have, or actually having, sexual relations

26. STATUS QUO(cont’d) • Emphasis on treatment for PMS (health supplements) • Emphasis on menopause • 55% of female residents over 45 years of age • Diagnosis, prevention and treatment of osteoporosis • Early detection of breast cancer