ESTABLISHING AN ACCESSIBLE WOMEN’S WELLNESS CENTER AT

ISRAEL ELWYN’S SUPPORTED LIVING CENTERS: VISION VS.

REALITY

Aya Roth, Director – Israel Elwyn Supported Living CentersIAJVS Conference, Houston, TXApril 2012

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

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.

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

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

A brief video…

• Movie

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

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

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

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)

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

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)

CARE FOR WOMEN WITH DISABILITIES

Paradox:

Women with disabilities

are sent for numerous tests

but suffer from under-diagnosis

and little actual testing

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.

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

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

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

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)

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

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

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

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:

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.

STATUS QUOWomen’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

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)

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)