Services in Israel Services in Israel

for People withfor People with

Prader-Willi SyndromePrader-Willi Syndrome

ByByLarry Genstil, Ph.DLarry Genstil, Ph.D..

Psychologist and Group Home Psychologist and Group Home OperatorOperator

The services for people with PWS in Israel consist of The services for people with PWS in Israel consist of 5 specific kinds5 specific kinds::

National Insurance InstituteNational Insurance Institute ((like Social Security in the USlike Social Security in the US))

PWS Multi-Disciplinary Clinic at Sha’are Zedek PWS Multi-Disciplinary Clinic at Sha’are Zedek Hospital in JerusalemHospital in Jerusalem

Non-Profit Parents Organization for PWS in IsraelNon-Profit Parents Organization for PWS in Israel

Two Group Homes for people with PWSTwo Group Homes for people with PWS

General Health ServicesGeneral Health Services

National Insurance InstituteNational Insurance Institute

There are two services providedThere are two services provided::

Disability Payments to families of Disability Payments to families of disabled children. The payments are disabled children. The payments are granted based on disability and on granted based on disability and on functioningfunctioning..

Disability payments to disabled adultsDisability payments to disabled adults

PWS Multi-Disciplinary ClinicPWS Multi-Disciplinary Clinicat Sha’are Zedek Hospital, at Sha’are Zedek Hospital,

JerusalemJerusalem

Most people diagnosed with PWS are seen at Most people diagnosed with PWS are seen at the clinic from around the countrythe clinic from around the country..

During the past 10 years or so, when a baby During the past 10 years or so, when a baby is born with severe hypotonia and FTT, is born with severe hypotonia and FTT, genetic testing is done and PWS can thus genetic testing is done and PWS can thus be diagnosed at a very early age. Before be diagnosed at a very early age. Before that, many people went undiagnosedthat, many people went undiagnosed..

Upon diagnosis, a referral is almost Upon diagnosis, a referral is almost automatically made to the Clinicautomatically made to the Clinic..

The Clinic Director is Professor Varda Gross, The Clinic Director is Professor Varda Gross, a pediatric neurologista pediatric neurologist..

Also in the clinic areAlso in the clinic are::

A Ped. Psychiatrist: Dr. Fortu BenarrochA Ped. Psychiatrist: Dr. Fortu BenarrochA Ped. Endocrinologist: Dr. Harry HirschA Ped. Endocrinologist: Dr. Harry HirschA Develop. Psychologist: Dr. Yael LandauA Develop. Psychologist: Dr. Yael LandauA Behavioral Psychologist: Dr. Larry GenstilA Behavioral Psychologist: Dr. Larry GenstilA Dietitian: Ronit DadushA Dietitian: Ronit Dadush

On call are an orthopedist, a pulmonologist, On call are an orthopedist, a pulmonologist, etcetc..

When a family is seen at the ClinicWhen a family is seen at the Clinic::

Each specialist relates to the patient Each specialist relates to the patient according to his specialty. Often medical according to his specialty. Often medical tests or evaluations are ordered (i.e., sleep tests or evaluations are ordered (i.e., sleep lab, blood tests, etc.)lab, blood tests, etc.)..

Recommendations are also made regarding Recommendations are also made regarding the homethe home::

Locking the kitchenLocking the kitchenProviding a low calorie dietProviding a low calorie dietProviding physical exerciseProviding physical exerciseEducating other family membersEducating other family members

Recommendations are also made regarding Recommendations are also made regarding schoolschool::

Constant supervisionConstant supervision

Staff trainingStaff training

Never using food rewardsNever using food rewards

Never leaving the child aloneNever leaving the child alone

Supervising the child when going to the Supervising the child when going to the bathroombathroom

Supervising the child on the playgroundSupervising the child on the playground

Training the other childrenTraining the other children

Behavioral managementBehavioral management

Non-Profit Parents’ OrganizationNon-Profit Parents’ Organization

A group of parents, under the leadership of Urith Boger, A group of parents, under the leadership of Urith Boger, organized a non-profit organization to provide all members organized a non-profit organization to provide all members withwith::

Referrals for servicesReferrals for servicesTranslations of materials from PWS organizations abroadTranslations of materials from PWS organizations abroad

Fund-raisingFund-raisingInformationInformation

Personal help in obtaining servicesPersonal help in obtaining servicesApplying group pressure for additional servicesApplying group pressure for additional services

Social activities for families with a PWS personSocial activities for families with a PWS personMutual supportMutual support

Two PWS Specialized Group Two PWS Specialized Group HomesHomes

The Genstil Institute HostelThe Genstil Institute Hostel

It began as a hostel for adolescents and young adults with It began as a hostel for adolescents and young adults with minor developmental disabilities, under the auspices of the minor developmental disabilities, under the auspices of the Dept. of Rehabilitation of the Social Affairs Ministry.Dept. of Rehabilitation of the Social Affairs Ministry.

By chance, a referral of a boy with PWS was made privately by By chance, a referral of a boy with PWS was made privately by his mother. He was accepted. His uncle shared this with his mother. He was accepted. His uncle shared this with the parents’ organization that a group home was willing to the parents’ organization that a group home was willing to accept people with PWS and that the director was familiar accept people with PWS and that the director was familiar with the syndrome.with the syndrome.

Then additional referrals of people with PWS began coming in. Then additional referrals of people with PWS began coming in. They were integrated into the group home with additional They were integrated into the group home with additional residents that had other problems but not PWS.residents that had other problems but not PWS.

In 1998, the Dept. of Rehab. recommended to In 1998, the Dept. of Rehab. recommended to divide the two groups so that the PWS residents divide the two groups so that the PWS residents would be in a separate group from the other would be in a separate group from the other residents, creating a special program just for residents, creating a special program just for them. This change was implemented on Dec. 1, them. This change was implemented on Dec. 1,

19981998 . .

Since that time the program has grown such that Since that time the program has grown such that one large house is not large enough to house all one large house is not large enough to house all of the residents. It was decided to divide the of the residents. It was decided to divide the residents into two groups, men and women, and residents into two groups, men and women, and house them separately. This change was house them separately. This change was implemented in July, 2006implemented in July, 2006..

Now there are 11 men in one house and 7 women Now there are 11 men in one house and 7 women with PWS in the second (with 2 additional women with PWS in the second (with 2 additional women with the needs of people with PWS but without with the needs of people with PWS but without the syndrome)the syndrome)..

The program consists of several The program consists of several componentscomponents::

A day program for each residentA day program for each resident::

Special education school programming for Special education school programming for those up to age 21those up to age 21

Rehabilitative and/or sheltered employment Rehabilitative and/or sheltered employment for those over 21for those over 21

In-house diet plan for each residentIn-house diet plan for each resident::

Low calorie diet based on 5 meals a day Low calorie diet based on 5 meals a day prepared by a dietitianprepared by a dietitian

Physical exercise programPhysical exercise program

Implemented twice a week by a Implemented twice a week by a specialistspecialist

Daily exercise done with the Daily exercise done with the counselorscounselors

TreadmillsTreadmills

Stationary bicycleStationary bicycle

Stair climbingStair climbing

Walking outsideWalking outside

JoggingJogging

Independent Living SkillsIndependent Living Skills

CookingCookingCleaningCleaningLaundryLaundryKeeping orderly roomsKeeping orderly roomsPersonal hygienePersonal hygiene

Leisure Time ActivitiesLeisure Time Activities

Arts and craftsArts and craftsOutings to movies, the mall, etcOutings to movies, the mall, etc..Swimming during the summerSwimming during the summerAnnual camping tripAnnual camping tripCelebrating holidays, birthdays, etcCelebrating holidays, birthdays, etc..Shabbat (the Jewish Sabbath)Shabbat (the Jewish Sabbath)PicnicsPicnicsComputers, games, internet, etcComputers, games, internet, etc..

Social Skills TrainingSocial Skills Training

Role playing social situationsRole playing social situationsCoaching residents in social skillsCoaching residents in social skillsProblem solving between residentsProblem solving between residentsEncouraging sharing feelings verballyEncouraging sharing feelings verballyTalks on friendship and relationshipsTalks on friendship and relationships

Behavior ManagementBehavior Management

Behavior chart for each residentBehavior chart for each residentReinforcers for individual behavioral issues and Reinforcers for individual behavioral issues and group issuesgroup issuesDiscussion every night on behaviors that need to be Discussion every night on behaviors that need to be improved and what was great that dayimproved and what was great that day

Staff TrainingStaff TrainingThe staff are trained on the job and during in-service training staff meetings. The staff are trained on the job and during in-service training staff meetings. The main areas of trainingThe main areas of training::

General information on PWSGeneral information on PWSBehavior managementBehavior managementHow to respond to various behaviorsHow to respond to various behaviorsThe need to emphasize visual communicationThe need to emphasize visual communicationThe need to never give in to requests for additional foodThe need to never give in to requests for additional foodImplementation of various components of the programImplementation of various components of the programIntervention during tantrums and crisesIntervention during tantrums and crisesIntervention for physically assaultive behaviorsIntervention for physically assaultive behaviorsInformation on specific residentsInformation on specific residentsInformation regarding medications of the residentsInformation regarding medications of the residentsWhen to deal with a situation directly and when to request backupWhen to deal with a situation directly and when to request backupTeam workTeam work

Unfortunately, there is no funding for pre-service trainingUnfortunately, there is no funding for pre-service training..

Areas of DifficultyAreas of Difficulty

Supervision of residents during day Supervision of residents during day programsprogramsThe need to accompany them to The need to accompany them to doctors’ appointments, meetings, doctors’ appointments, meetings, etcetc..Funding which does not meet all these Funding which does not meet all these needsneedsThe problems arising when residents The problems arising when residents go home for Shabbat or a holidaygo home for Shabbat or a holiday

The Second Group Home: Beit The Second Group Home: Beit OdedOded

After the Genstil Institute Hostel was up and running as a After the Genstil Institute Hostel was up and running as a special PWS home for several years, a group of parents got special PWS home for several years, a group of parents got together and applied pressure on the Dept. of together and applied pressure on the Dept. of Rehabilitation to open a second facility in the north of Rehabilitation to open a second facility in the north of Israel, in order to offer easier access for families that did Israel, in order to offer easier access for families that did not want to place their children so far awaynot want to place their children so far away..

After several attempts by the Dept., a tender was issued and a After several attempts by the Dept., a tender was issued and a program in the north of Israel took upon itself to open a program in the north of Israel took upon itself to open a second homesecond home..

They opened just 2 months ago in Carmiel. They have 3 They opened just 2 months ago in Carmiel. They have 3 residents, with a 4residents, with a 4thth on the way. They hope to have a home on the way. They hope to have a home with at least 8 residents in the near future, in order to allow with at least 8 residents in the near future, in order to allow for fiscal stabilityfor fiscal stability..

General Health ServicesGeneral Health ServicesIn Israel, every resident is a member of one of four health funds. Each health 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’ fund provides major medical services to all members, including doctors’ visits, lab tests, specialists, hospitalization, and medicationsvisits, lab tests, specialists, hospitalization, and medications..

Some doctors’ visits are not approved by the health funds, making it difficult Some doctors’ visits are not approved by the health funds, making it difficult for some servicesfor some services..

Some medications are not included in the basket of health services, which is Some medications are not included in the basket of health services, which is updated annually. Those that are not included, but deemed necessary for updated annually. Those that are not included, but deemed necessary for the residents, are problematic because then they need to be purchased the residents, are problematic because then they need to be purchased privatelyprivately..

Dental care is not in the basket of services. The Dept. of Rehabilitation Dental care is not in the basket of services. The Dept. of Rehabilitation provides basic dental services, but not specialized servicesprovides basic dental services, but not specialized services . .

Psychiatric care is included in the funding paid to each group home, and each Psychiatric care is included in the funding paid to each group home, and each one has its own psychiatrist which treats the residentsone has its own psychiatrist which treats the residents..