Transcript Services in Israel for People with Prader

Services in Israel
for People with
Prader-Willi Syndrome
By
Larry Genstil, Ph.D.
Psychologist and Group Home
Operator
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
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
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.
The Clinic Director is Professor Varda Gross,
a pediatric neurologist.
Also in the clinic are:
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Ped. Psychiatrist: Dr. Fortu Benarroch
Ped. Endocrinologist: Dr. Harry Hirsch
Develop. Psychologist: Dr. Yael Landau
Behavioral Psychologist: Dr. Larry Genstil
Dietitian: Ronit Dadush
On call are an orthopedist, a pulmonologist,
etc.
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
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
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 
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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.
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).
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
Physical exercise program
Implemented twice a week by a
specialist
Daily exercise done with the
counselors
Treadmills
Stationary bicycle
Stair climbing
Walking outside
Jogging
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.
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
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.
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
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.
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.