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.  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: JERUSALEM: HMO SERVICES FOR WOMEN (cont’d)

11.  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 JERUSALEM: HMO SERVICES FOR WOMEN (cont’d) Result: Visits uncomfortable, uninviting, stressful

12. 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 JERUSALEM: HMO SERVICES FOR WOMEN (cont’d)

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.  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 ARGUMENTS FOR ONSITE CLINIC

17. PROCESS OF ESTABLISHING THE CLINIC 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

18. 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 PROCESS OF ESTABLISHING THE CLINIC (cont’d)

19.  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 PROCESS OF ESTABLISHING THE CLINIC: ADAPTED EQUIPMENT

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

21.  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 PROCESS OF ESTABLISHING THE CLINIC: PERSONNEL

22.  Prevent creation of a “bubble”  Enhance possibility for future accessibility of community clinics for women with disabilities with the help of this knowledge PROCESS OF ESTABLISHING THE CLINIC: COMMUNITY INCLUSION 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 May 2011: IE invited government professionals to a seminar on osteoporosis in women with intellectual disabilities  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.

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.  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 STATUS QUO (cont’d)

26.  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 STATUS QUO (cont’d)