Services in Israel for People with Prader-Willi Syndrome

1
Services in Israel for People
withPrader-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 Shaare 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 Clinicat Shaare 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.

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• 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).

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• 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
• Stationary bicycle
• Stair climbing
• Walking outside
• Jogging

13

• Independent Living Skills
• Cooking
• Cleaning
• Laundry
• 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.

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• 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.

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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 4th 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.