1. Services in Israel for People with Prader-Willi Syndrome By Larry Genstil, Ph.D. Psychologist and Group Home Operator

2. The services for people with PWS in Israel consist of 5 specific kinds: National Insurance Institute (like Social Security in the US) PWS Multi-Disciplinary Clinic at Sha ’ are Zedek Hospital in Jerusalem Non-Profit Parents Organization for PWS in Israel Two Group Homes for people with PWS General Health Services

3. National Insurance Institute There are two services provided: Disability Payments to families of disabled children. The payments are granted based on disability and on functioning. Disability payments to disabled adults

4. PWS Multi-Disciplinary Clinic at Sha’are Zedek Hospital, Jerusalem Most people diagnosed with PWS are seen at the clinic from around the country. During the past 10 years or so, when a baby is born with severe hypotonia and FTT, genetic testing is done and PWS can thus be diagnosed at a very early age. Before that, many people went undiagnosed. Upon diagnosis, a referral is almost automatically made to the Clinic.

5. The Clinic Director is Professor Varda Gross, a pediatric neurologist. Also in the clinic are: A Ped. Psychiatrist: Dr. Fortu Benarroch A Ped. Endocrinologist: Dr. Harry Hirsch A Develop. Psychologist: Dr. Yael Landau A Behavioral Psychologist: Dr. Larry Genstil A Dietitian: Ronit Dadush On call are an orthopedist, a pulmonologist, etc.

6. When a family is seen at the Clinic: Each specialist relates to the patient according to his specialty. Often medical tests or evaluations are ordered (i.e., sleep lab, blood tests, etc.). Recommendations are also made regarding the home: Locking the kitchen Providing a low calorie diet Providing physical exercise Educating other family members

7. Recommendations are also made regarding school: Constant supervision Staff training Never using food rewards Never leaving the child alone Supervising the child when going to the bathroom Supervising the child on the playground Training the other children Behavioral management

8. Non-Profit Parents’ Organization  A group of parents, under the leadership of Urith Boger, organized a non-profit organization to provide all members with:  Referrals for services  Translations of materials from PWS organizations abroad  Fund-raising  Information  Personal help in obtaining services  Applying group pressure for additional services  Social activities for families with a PWS person  Mutual support

9. Two PWS Specialized Group Homes The Genstil Institute Hostel It began as a hostel for adolescents and young adults with minor developmental disabilities, under the auspices of the Dept. of Rehabilitation of the Social Affairs Ministry. By chance, a referral of a boy with PWS was made privately by his mother. He was accepted. His uncle shared this with the parents ’ organization that a group home was willing to accept people with PWS and that the director was familiar with the syndrome. Then additional referrals of people with PWS began coming in. They were integrated into the group home with additional residents that had other problems but not PWS.

10. In 1998, the Dept. of Rehab. recommended to divide the two groups so that the PWS residents would be in a separate group from the other residents, creating a special program just for them. This change was implemented on Dec. 1, 1998. Since that time the program has grown such that one large house is not large enough to house all of the residents. It was decided to divide the residents into two groups, men and women, and house them separately. This change was implemented in July, 2006. Now there are 11 men in one house and 7 women with PWS in the second (with 2 additional women with the needs of people with PWS but without the syndrome).

11. The program consists of several components: A day program for each resident: Special education school programming for those up to age 21 Rehabilitative and/or sheltered employment for those over 21 In-house diet plan for each resident: Low calorie diet based on 5 meals a day prepared by a dietitian

12. Physical exercise program Implemented twice a week by a specialist Daily exercise done with the counselors Treadmills Treadmills Stationary bicycle Stationary bicycle Stair climbing Stair climbing Walking outside Walking outside Jogging Jogging

13. Independent Living Skills CookingCleaningLaundry Keeping orderly rooms Personal hygiene Leisure Time Activities Arts and crafts Outings to movies, the mall, etc. Swimming during the summer Annual camping trip Celebrating holidays, birthdays, etc. Shabbat (the Jewish Sabbath) Picnics Computers, games, internet, etc.

14. Social Skills Training Role playing social situations Coaching residents in social skills Problem solving between residents Encouraging sharing feelings verbally Talks on friendship and relationships Behavior Management Behavior chart for each resident Reinforcers for individual behavioral issues and group issues Discussion every night on behaviors that need to be improved and what was great that day

15. Staff Training The staff are trained on the job and during in-service training staff meetings. The main areas of training: General information on PWS Behavior management How to respond to various behaviors The need to emphasize visual communication The need to never give in to requests for additional food Implementation of various components of the program Intervention during tantrums and crises Intervention for physically assaultive behaviors Information on specific residents Information regarding medications of the residents When to deal with a situation directly and when to request backup Team work Unfortunately, there is no funding for pre-service training.

16. Areas of Difficulty Supervision of residents during day programs The need to accompany them to doctors ’ appointments, meetings, etc. Funding which does not meet all these needs The problems arising when residents go home for Shabbat or a holiday

17. The Second Group Home: Beit Oded After the Genstil Institute Hostel was up and running as a special PWS home for several years, a group of parents got together and applied pressure on the Dept. of Rehabilitation to open a second facility in the north of Israel, in order to offer easier access for families that did not want to place their children so far away. After several attempts by the Dept., a tender was issued and a program in the north of Israel took upon itself to open a second home. They opened just 2 months ago in Carmiel. They have 3 residents, with a 4 th on the way. They hope to have a home with at least 8 residents in the near future, in order to allow for fiscal stability.

18. General Health Services In Israel, every resident is a member of one of four health funds. Each health fund provides major medical services to all members, including doctors ’ visits, lab tests, specialists, hospitalization, and medications. Some doctors ’ visits are not approved by the health funds, making it difficult for some services. Some medications are not included in the basket of health services, which is updated annually. Those that are not included, but deemed necessary for the residents, are problematic because then they need to be purchased privately. Dental care is not in the basket of services. The Dept. of Rehabilitation provides basic dental services, but not specialized services. Psychiatric care is included in the funding paid to each group home, and each one has its own psychiatrist which treats the residents.