‘Special kid when I need; regular kid when I can’
Experts at conference on problems of chronically ill children chargethat Israel, medical system not doing enough.
Children receiving medical treatment in hospital Photo: Jorge Lopez / Reuters
Israel is a very child-oriented society, and most parents would do anything to
ensure that their offsprings’ lives be better than their own. But this doesn’t
translate into action by the state and the health system, even though children
are the country’s future and preventing and treating chronic diseases in
youngsters offer high returns on a cost-benefit scale.
“Children are 30
percent of our people and of hospital patients, but they don’t get 30% of health
budgets. They can’t be treated like small adults,” said Prof. Eitan Kerem,
director of the pediatrics division at Jerusalem’s Hadassah-Hebrew University
Medical Centers and co-chair of last week’s Gerry Schwartz and Heather Reisman
Third International Conference on Pediatric Chronic Diseases, Disability and
Human Development at the capital’s Ramada Hotel.
“We love children, but
[...] they don’t vote.
There isn’t enough government investment and
support for children with health problems.
An estimated 16% of Israeli
children have one or more chronic diseases. Their families need guidance and
support so they don’t feel alone. They are a weak link in our society, and they
constantly struggle for survival,” said Kerem.
Thus the Hadassah Center
for Children with Chronic Diseases (HCCCD) was established in
Though the severity of chronic illnesses is variable, Kerem
continued, there are common challenges confronted by these children and their
families. Medical care geared solely toward specific physical conditions is
inadequate, as children with chronic conditions require comprehensive
rehabilitative services, psychological care and assistance in coping with both
social and educational environments that are not set up for the special
requirements of a child with a chronic disease.
A child’s greatest desire
is to be like everyone else, and parents want to see their children leading as
normal lives as possible.
Unfortunately, chronic disease stands in the
way of such aspiration, and these children are often not afforded the chance to
experience social interactions even when they are capable of doing
Mothers should not be forced to serve as their disabled child’s case
manager, he said.
“She has no expertise in this. In our center of
multidisciplinary, highly trained health professionals, we are a one-stop center
for clinical evaluations and monitoring and serve as a national resource center
We had 6,000 visits last year,” Kerem said.
campus on Mount Scopus houses the HCCCD, set up by then-director-general of the
Hadassah Medical Organization Prof.
Shlomo Mor-Yosef, who is the new
directorgeneral of the National Insurance Institute.
that the country’s health funds have been “antagonistic to the HCCCD. They don’t
approve referrals for many children to be seen in our center, which is a
one-stop shop that works holistically to make it easier for children and their
parents. Instead, they prefer to refer them to a variety of their doctors and
institutes in a variety of locations. The treatment of chronic pediatric disease
requires holistic care that sees the patient as a child with a disease and not
as a disease that is attached to a child.”
MOR-YOSEF, now wearing his new
professional hat, said the NII aims to create an inclusive and accessible
society for all. (The conference was held on the UN’s International Day of
Persons with Disabilities.) He noted that the NII, with its 43 branches and
3,800 staffers, provides over 20 types of benefits to almost three million
Israelis, including allotments for the aged, disabled and victims of work
injuries, long-term care, survivors, new mothers, and unemployed and child
benefits and income support.
“We don’t compensate for a disease alone –
only if the government feels it should provide compensation, as for a terror
attack, war victims, polio [because it didn’t have a vaccination against it
then] and other circumstances, but it doesn’t feel responsible for victims of
cancer or other diseases. But if people can’t work or be mobile, the NII helps,”
said Mor-Yosef, adding that only in 1981 did the country start to give benefits
for children aged three and above and then in 1991 from birth to age three. The
parental means test was cancelled in 1995, and since then all have been eligible
While the state does not yet do enough, he said, half of OECD
countries do not provide their children with specific benefits for special-
needs children, and we give the thirdhighest amount of benefits (relative to
GDP) in the OECD, Mor-Yosef said.
The initiator and another co-chair of
the conference was Prof. Joav Merrick, a pediatrician and the founder and
director of the National Institute of Child Health and Human Development, and
the only physician at the Welfare and Social Services Ministry.
disabled children who are taken care of mostly by their parents at home have the
most difficult time. Merrick dreams that more holistic centers for chronically
ill children will be established throughout Israel so that Hadassah’s will not
be the only one.
“Not only would they treat epilepsy, psychiatric
diseases, dental problems and many others, but these centers would conduct
academic research, and the doctors would have in-depth know-how in treating
people with disabilities,” he told the conference.
Levtzion-Korach, the new director- general of Hadassah Medical Center on Mount
Scopus, praised the 577-bed Cincinnati Children’s Hospital, one of America’s
leading children’s medical centers, which has an ongoing exchange program with
Israeli pediatrics facilities and was Hadassah’s partner in the
“Our center does its utmost so that disabled and chronically
ill children can have a normal life. But the country has a long way to go. Over
half of adults with disabilities are unemployed. Society still focuses on the
weaknesses of this group and not on their strengths,” she said.
KALMAN Samuels, who in 1990 with his wife Malki founded Shalva, a unique
non-profit center in the capital’s Har Nof quarter that provides services to
more than 500 participants with special needs, including infants, children,
adolescents and young adults through a wide variety of tailored programs and
Conference participants were shocked and
amazed by his story about his son Yossi, now 36 years old, who was rendered
blind, deaf and hyperactive from a defective DPT vaccination.
described the tortuous ordeal the family went through; for eight years, Yossi
lived in a closed world with no one able to penetrate his bubble, taking a heavy
toll on the parents. Providing him with constant loving care, they became
exhausted and isolated.
Many professionals and well-intentioned friends
suggested placing Yossi in an institution. But Malki refused and vowed that if
God helped Yossi, she would dedicate herself to helping other special needs
children and their families.
It took a few years until her prayers were
answered. When Yossi was eight years old, a deaf special education teacher named
Shoshanna Weinstock penetrated his veil of silence by Hebrew finger-spelling
into his hand, in much the same way that Annie Sullivan reached Helen Keller.
Shoshanna taught Yossi his first word – the Hebrew word for table – and, almost
immediately, the walls of his personal prison collapsed.
her promise, and soon thereafter the couple established Shalva, which means
“peace of mind” in Hebrew.
After spending five years dealing with red
tape, the Samuels family look forward to the opening of a new Shalva center near
Shaare Zedek Medical Center, which will be huge and will offer even more
services to disabled children from around the country.
extremely intelligent young man blessed with the amazing ability to learn
without being able to see or hear, is confined to a wheelchair now, but he was
hosted by George Bush in White House five years ago, has traveled to Paris and
London and will join the March of the Living in Poland next year.
JESSICA Kahn, a pediatrician at Cincinnati Children’s Hospital who specializes
in adolescent medicine, told The Jerusalem Post in an interview that her field
It’s a privilege to work there. We have almost 30,000
teens evaluated and treated each year, most of them as outpatients. The staff
deal not only with pediatric primary care but also mental health, school
problems, substance abuse (largely marijuana), alcoholism, teen pregnancies and
other gynecological issues such as sexually transmitted diseases and eating
disorders, to name only a few.”
She noted that Dr. Shelly Ben-Harush
Nagari, a Hadassah pediatrician, recently came to the Cincinnati hospital to
study her sub-specialty and will set up an adolescent medicine center in
Jerusalem in three years.
“The earlier children’s health problems are
diagnosed and treated the better,” said Kahn, whose husband is a general
pediatrician and whose four children, aged nine to 17, have all been to Israel
Prof. Gerry Leisman, a former professor at the University of
Leeds, set up the National Institute for Rehabilitation Sciences in Nazareth for
cooperation between Jews and Arabs in the engineering sciences and medical and
behavioral sciences. It has partnered with ORT Braude College of Engineering in
Karmiel and the University of Medical Sciences in Havana, Cuba.
in biomedical engineering and neurosciences research. We are developing
wheelchairs that can climb stairs and other devices that will help patients,” he
Another very promising technology they are working on is a device
with foam-covered slats that shifts the weight of patients in chairs and can
“prevent bedsores.” It could also be used by long-distance truck and bus drivers
and be turned into beds for confined patients as well.
Dr. Calixto Machado attended the conference and, making his first visit to
Israel, fell in love with this country.
“I feel completely at home. I am
free to travel out of Cuba, and I have excellent contacts with foreign
scientists and physicians. I have been to the US more than 25 times,” he said,
noting that he met Leisman when he was attending a scientific meeting in Havana.
“We became friends, and he invited me to New York.”
The Cuban doctor
conducted research on autism spectrum disorders, as he is fascinated by the
connections in the brain, as well as brain death. He will now collaborate with
the Nazareth institute.
“I would love to have exchange programs in
science and medicine with my colleagues in Nazareth,” he said.
prototype for an artificial, implantable kidney that would “eliminate kidney
dialysis” for adults and eventually children has been developed by Dr. Zvi
Herschman of West Hempstead, Long Island, who also collaborates with the
“It would have a huge impact on the dialysis and kidney
transplant sphere,” he said, adding that the Obama administration has made it
very difficult, due to tax and regulatory policy, to develop such medical
devices in the US that he and his colleagues decided to turn to Israel.
“Dialysis was a $9 billion business in 2009. We are looking into industrial
incubators and investors here,” said the physician, who is modern
It took several years of work to reach the current stage, and
his application for a patent was registered.
“It would not only be a
permanent artificial kidney but also a temporary external device for patients
who had temporary kidney failure after sepsis or major operations,” he said. “It
has no movable parts,” he added, but declined to give more technical details.