Genstil-IPWSO Conference Presentation.ppt

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Genstil-IPWSO Conference Presentation.ppt

  1. 1. Services in IsraelServices in Israel for People withfor People with Prader-Willi SyndromePrader-Willi Syndrome ByBy Larry Genstil, Ph.DLarry Genstil, Ph.D.. Psychologist and Group HomePsychologist and Group Home OperatorOperator
  2. 2. The services for people with PWS in Israel consist ofThe 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 ZedekPWS 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
  3. 3. National Insurance InstituteNational Insurance Institute There are two services providedThere are two services provided:: Disability Payments to families ofDisability Payments to families of disabled children. The paymentsdisabled children. The payments are granted based on disability andare granted based on disability and on functioningon functioning.. Disability payments to disabled adultsDisability payments to disabled adults
  4. 4. PWS Multi-Disciplinary ClinicPWS Multi-Disciplinary Clinic at Sha’are Zedek Hospital,at Sha’are Zedek Hospital, JerusalemJerusalem Most people diagnosed with PWS are seen atMost 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 babyDuring 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 thusgenetic testing is done and PWS can thus be diagnosed at a very early age. Beforebe diagnosed at a very early age. Before that, many people went undiagnosedthat, many people went undiagnosed.. Upon diagnosis, a referral is almostUpon diagnosis, a referral is almost automatically made to the Clinicautomatically made to the Clinic..
  5. 5. 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 Benarroch A Ped. Endocrinologist: Dr. Harry HirschA Ped. Endocrinologist: Dr. Harry Hirsch A Develop. Psychologist: Dr. Yael LandauA Develop. Psychologist: Dr. Yael Landau A Behavioral Psychologist: Dr. Larry GenstilA Behavioral Psychologist: Dr. Larry Genstil A Dietitian: Ronit DadushA Dietitian: Ronit Dadush On call are an orthopedist, a pulmonologist,On call are an orthopedist, a pulmonologist, etcetc..
  6. 6. When a family is seen at the ClinicWhen a family is seen at the Clinic:: Each specialist relates to the patientEach specialist relates to the patient according to his specialty. Often medicalaccording to his specialty. Often medical tests or evaluations are ordered (i.e.,tests or evaluations are ordered (i.e., sleep lab, blood tests, etcsleep lab, blood tests, etc.(..(. Recommendations are also made regardingRecommendations are also made regarding the homethe home:: Locking the kitchenLocking the kitchen Providing a low calorie dietProviding a low calorie diet Providing physical exerciseProviding physical exercise Educating other family membersEducating other family members
  7. 7. Recommendations are also made regardingRecommendations 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 theSupervising 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
  8. 8. 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 membersorganized a non-profit organization to provide all members withwith:: Referrals for servicesReferrals for services Translations of materials from PWS organizations abroadTranslations of materials from PWS organizations abroad Fund-raisingFund-raising InformationInformation Personal help in obtaining servicesPersonal help in obtaining services Applying group pressure for additional servicesApplying group pressure for additional services Social activities for families with a PWS personSocial activities for families with a PWS person Mutual supportMutual support
  9. 9. Two PWS Specialized GroupTwo PWS Specialized Group HomesHomes The Genstil Institute HostelThe Genstil Institute Hostel It began as a hostel for adolescents and young adults withIt began as a hostel for adolescents and young adults with minor developmental disabilities, under the auspices of theminor 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 privatelyBy chance, a referral of a boy with PWS was made privately by his mother. He was accepted. His uncle shared thisby his mother. He was accepted. His uncle shared this with the parents’ organization that a group home waswith the parents’ organization that a group home was willing to accept people with PWS and that the director waswilling to accept people with PWS and that the director was familiar with the syndrome.familiar 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 additionalThey were integrated into the group home with additional residents that had other problems but not PWS.residents that had other problems but not PWS.
  10. 10. In 1998, the Dept. of Rehab. recommended toIn 1998, the Dept. of Rehab. recommended to divide the two groups so that the PWS residentsdivide the two groups so that the PWS residents would be in a separate group from the otherwould be in a separate group from the other residents, creating a special program just forresidents, 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 thatSince that time the program has grown such that one large house is not large enough to house allone large house is not large enough to house all of the residents. It was decided to divide theof the residents. It was decided to divide the residents into two groups, men and women, andresidents into two groups, men and women, and house them separately. This change washouse them separately. This change was implemented in July, 2006implemented in July, 2006.. Now there are 11 men in one house and 7 womenNow there are 11 men in one house and 7 women with PWS in the second (with 2 additional womenwith PWS in the second (with 2 additional women with the needs of people with PWS but withoutwith the needs of people with PWS but without the syndromethe syndrome(.(.
  11. 11. The program consists of severalThe program consists of several componentscomponents:: A day program for each residentA day program for each resident:: Special education school programming forSpecial education school programming for those up to age 21those up to age 21 Rehabilitative and/or sheltered employmentRehabilitative 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 dayLow calorie diet based on 5 meals a day prepared by a dietitianprepared by a dietitian
  12. 12. Physical exercise programPhysical exercise program Implemented twice a week by aImplemented twice a week by a specialistspecialist Daily exercise done with theDaily exercise done with the counselorscounselors TreadmillsTreadmills Stationary bicycleStationary bicycle Stair climbingStair climbing Walking outsideWalking outside JoggingJogging
  13. 13. Independent Living SkillsIndependent Living Skills CookingCooking CleaningCleaning LaundryLaundry Keeping orderly roomsKeeping orderly rooms Personal hygienePersonal hygiene Leisure Time ActivitiesLeisure Time Activities Arts and craftsArts and crafts Outings to movies, the mall, etcOutings to movies, the mall, etc.. Swimming during the summerSwimming during the summer Annual camping tripAnnual camping trip Celebrating holidays, birthdays, etcCelebrating holidays, birthdays, etc.. Shabbat (the Jewish SabbathShabbat (the Jewish Sabbath(( PicnicsPicnics Computers, games, internet, etcComputers, games, internet, etc..
  14. 14. Social Skills TrainingSocial Skills Training Role playing social situationsRole playing social situations Coaching residents in social skillsCoaching residents in social skills Problem solving between residentsProblem solving between residents Encouraging sharing feelings verballyEncouraging sharing feelings verbally Talks on friendship and relationshipsTalks on friendship and relationships Behavior ManagementBehavior Management Behavior chart for each residentBehavior chart for each resident Reinforcers for individual behavioral issues andReinforcers for individual behavioral issues and group issuesgroup issues Discussion every night on behaviors that need to beDiscussion every night on behaviors that need to be improved and what was great that dayimproved and what was great that day
  15. 15. Staff TrainingStaff Training The 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 PWS Behavior managementBehavior management How to respond to various behaviorsHow to respond to various behaviors The need to emphasize visual communicationThe need to emphasize visual communication The need to never give in to requests for additional foodThe need to never give in to requests for additional food Implementation of various components of the programImplementation of various components of the program Intervention during tantrums and crisesIntervention during tantrums and crises Intervention for physically assaultive behaviorsIntervention for physically assaultive behaviors Information on specific residentsInformation on specific residents Information regarding medications of the residentsInformation regarding medications of the residents When to deal with a situation directly and when to request backupWhen to deal with a situation directly and when to request backup Team workTeam work Unfortunately, there is no funding for pre-service trainingUnfortunately, there is no funding for pre-service training..
  16. 16. Areas of DifficultyAreas of Difficulty Supervision of residents during daySupervision of residents during day programsprograms The need to accompany them toThe need to accompany them to doctors’ appointments, meetings,doctors’ appointments, meetings, etcetc.. Funding which does not meet all theseFunding which does not meet all these needsneeds The problems arising when residentsThe problems arising when residents go home for Shabbat or a holidaygo home for Shabbat or a holiday
  17. 17. The Second Group Home: BeitThe Second Group Home: Beit OdedOded After the Genstil Institute Hostel was up and running as aAfter the Genstil Institute Hostel was up and running as a special PWS home for several years, a group of parents gotspecial PWS home for several years, a group of parents got together and applied pressure on the Dept. oftogether and applied pressure on the Dept. of Rehabilitation to open a second facility in the north ofRehabilitation to open a second facility in the north of Israel, in order to offer easier access for families that didIsrael, 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 andAfter several attempts by the Dept., a tender was issued and a program in the north of Israel took upon itself to open aa 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 3They 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 homeon the way. They hope to have a home with at least 8 residents in the near future, in order to allowwith at least 8 residents in the near future, in order to allow for fiscal stabilityfor fiscal stability..
  18. 18. General Health ServicesGeneral Health Services In Israel, every resident is a member of one of four health funds. Each healthIn 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 difficultSome 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 isSome medications are not included in the basket of health services, which is updated annually. Those that are not included, but deemed necessary forupdated annually. Those that are not included, but deemed necessary for the residents, are problematic because then they need to be purchasedthe residents, are problematic because then they need to be purchased privatelyprivately.. Dental care is not in the basket of services. The Dept. of RehabilitationDental 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 eachPsychiatric 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..

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