‘Special kid when I need; regular kid when I can’

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 2007.

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 so.

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 for families.

We had 6,000 visits last year,” Kerem said.

The 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.

Kerem complained 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 for help.

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.

He said 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.

Dr. Osnat 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 conference.

“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.

RABBI 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 round-the-clock therapies.

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.

Samuels 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.

Malki remembered 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.

Yossi, an 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.

DR. JESSICA Kahn, a pediatrician at Cincinnati Children’s Hospital who specializes in adolescent medicine, told The Jerusalem Post in an interview that her field is “fascinating.

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 before.

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.

“I work in biomedical engineering and neurosciences research. We are developing wheelchairs that can climb stairs and other devices that will help patients,” he said.

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.

Cuban neurologist 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.

A 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 Nazareth team.

“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 Orthodox.

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.