It takes a village

Treatment of children with chronic diseases is a complex, grueling task for parents, medical staff and community services.

By JUDY SIEGEL-ITZKOVICH
A young patient at the Pilot School for Hospitalized Children at the Hadassah Medical Center, Ein Kerem, Jerusalem. (photo credit: MIRIAM ALSTER)
A young patient at the Pilot School for Hospitalized Children at the Hadassah Medical Center, Ein Kerem, Jerusalem.
(photo credit: MIRIAM ALSTER)
One of the most popular shows on TV is Baby Boom, in which nervous and excited couples rush to the obstetrics department of a Petah Tikva hospital – the women moaning and giving birth in front of cameras, with an epidural anesthetic or by cesarean section. A few days later, the parents go home carrying a healthy, bouncing newborn in a carriage or baby seat, and they all presumably live happily ever after.
Yet unfortunately, that is not the scenario for all 175,000 infants born here in 2014. A significant minority are born with congenital, physical, intellectual or developmental defects running the gamut from cerebral palsy to Down syndrome, while others are diagnosed with disorders from autism and asthma to cancers and type-1 diabetes later in their young lives. These children and their parents are not photographed in hospital or health fund promotional photos, and their families struggle to cope with disability and sometimes even death.
As in most cases, specialists and treatment facilities are spread in various locations, parents have to lose work time taking children for diagnoses and care, and some of the costs aren’t provided by the health funds, social service agencies and non-governmental organizations (NGOs).
One of the few one-stop facilities for children with long-term disorders is the Center for Children with Chronic Diseases at Hadassah University Medical Center on Jerusalem’s Mount Scopus. Part of the pediatric division of the Hadassah Medical Organization (HMO), both the pediatrics departments there and in Ein Kerem, as well as the chronic disease center, are headed by Prof.
Eitan Kerem, a leading exert in pediatric pulmonology. He personally heads teams that treat young victims of cystic fibrosis (CF), asthma and other lung diseases.
Kerem recently addressed the Fourth International Gerry Schwartz and Heather Reisman Conference on Pediatric Chronic Diseases, Disability and Human Development at the capital’s Crowne Plaza Hotel. Held with support from the foundation of Canadian philanthropists for whom it is named, it was also organized by HMO with help from Cincinnati Children’s Hospital and various local NGOs.
US data show that 16 percent of children there have special healthcare needs, while figures here run from an estimated 230,000 to 290,000 – a major chunk of the Israeli population.
Kerem told several hundred conference participants from here and abroad that in recent decades more children have survived diseases like cancer, CF, cerebral palsy and HIV and become chronic patients needing long-term care. The survival rate for children with blood cancers, for example, used to reach 20 percent, but that figure has quadrupled, he said. In 1960, the majority of young CF patients died, but today, over half live to the age of 50.
Diseases with less severe impact, such as asthma, obesity, attention- deficit hyperactivity disorder (ADHD) and learning disabilities are diagnosed and also require intensive treatment.
“The child and his or her parents has to learn to live with chronic diseases, and parents and siblings have their own challenges coping,” he noted.
Young patients need regular physical checkups, have to maintain frequent contact with medical personnel and may suffer from growth failure and delayed development.
“They have to follow medical advice and need unpleasant, painful, time-consuming treatments that interfere with daily life. Children miss school, may suffer from impaired self-esteem, may feel guilt and rejection by society and God, depression, anger and loneliness,” said Kerem.
“Some suffer with two or more disabilities; for example, ADHD may appear in over 44% of CF patients.”
Parents often mourn, need to change the definitions in their lives and focus more on the needs of all their children and the family.
“Many parents,” said the senior pediatrician, “feel guilt for passing on a disease genetically or for not devoting enough time and effort to the [affected child’s] healthy siblings.
They fear the future, contemplate the possibility that their children will die, that they won’t be able to afford care and need more and more time to cope with it all. The families feel social isolation and may collapse.
Divorce rates are double that of families with healthy children.”
Siblings may be embarrassed by a sick brother or sister, fear their death, feel negligent and become angry.
“Sometimes they may wish that their sibling dies to end all the problems,” said Kerem, “but what they really mean is that they want the disease to die and not their brother or sister. But a child with chronic disorders still has the same needs as any other child.”
Yet treating families as a unit and not just as a disease is preferable – as coping, acceptance and adaption lead to adherence to therapy, he said.
This leads to lower costs and better health. A one-stop shop for chronic pediatric diseases is called a “medical home where children and family can call any time for questions and get holistic care. The doctor comes to see the patient rather than the other way around. Support services are at the same location. There is an experienced case manager to coordinate.
Ours is patient-oriented rather than disease-oriented care. Comprehensive care means less psychological trauma, fewer admissions, a better outcome and lower costs.”
PROF. SHLOMO Mor-Yosef, a former longtime HMO director-general and trained gynecologist who has for the past few years been director-general of the National Insurance Institute (NII), does not need to be briefed about children’s disabilities.
“I have a sister with Down syndrome, was head of Hadassah and now I head the NII, which is committed to helping chronically ill children,” he told the conference participants.
“The responsibility for these children is shared by the family, medical institutions, NGOs and the government,” he continued. “I represent the government. The NII provides 20 different kinds of benefits to almost three million recipients around the country. We have 4,000 employees in 73 branches and smaller units. We collect health taxes and social security payments and allocate to needy sectors NIS 100 billion every year – which is more than the entire defense budget, including US support.”
He added that NII “invests a lot in social – not just physical – security.
But it isn’t enough. When we compare what we invest to the gross domestic product, we have far to go, even though we put into it so many billions.”
Child benefits were introduced in 1959, more than a decade after the state was established. Unfortunately, today their levels are too low, said Mor-Yosef.
“Only in 1974 did we start paying disability benefits for people who can’t go to work; it’s compensation not for the disability itself but for being unemployed and unable to support [yourself]. Just in 1981 did the government establish disabled child benefits; national health insurance in 1995 and compensation for polio victims [who were sick in the 1940s and 1950s] only in 2007.”
The NII also provides money for unemployment, Israel Defense Forces reserve service, maternity leave, work injuries, general disability, long-term care, old age and survivors. Of the NIS 100b. a year, a fifth goes to the disabled. Of this, NIS 6b. is for longterm care for people from retirement age to the end of life.
“We give allocations for 42,000 children who suffer from disabilities or are dependent on others. And one third of them,” said Mor-Yosef, “suffer from more than one impairment.”
The largest number of recipients are children suffering from autism-spectrum disorders, psychosis, hearing loss, vision impairment, developmental delay, Down syndrome and communication problems.
With the advent of National Health Insurance in 1995, the NII canceled the means test for benefits to children; before that, children whose families earned more than a certain amount were disqualified.
“But what we give is still not enough. We encourage families to keep the chronically ill, disabled child at home and the community rather than in institutions. We try to ease the parents’ financial burden of caring for the child and maintaining as normal a life as possible.”
Four years later, recommendations were made to increase the number of medical conditions for which the NII gives allotments, and the government allowed implementation more than a decade later.
“Israel is the fifth – after France, Sweden, Norway and Iceland – among OECD countries in terms of comparable benefits in terms of GDP.
In half of those countries, there is no special financial benefit for children with special needs,” pointed out the NII director-general.
“There are families with children suffering from chronic diseases who get tax benefits – and some pay no income tax at all. They may get money for special schooling, study during long hospitalizations, schooling for kids who can’t go to school, transportation, assistants in kindergarten and school, medical and paramedical treatment, summer camps and vacations. Others get reductions in their water, property tax, electricity and phone bills. So we are still relatively generous, even though it isn’t enough,” Mor-Yosef concluded.
“EVERYONE HAS some kind of disability,” said Dr. Maurit Beeri, director- general of Jerusalem’s Alyn Hospital for the rehabilitation of physically challenged and disabled children, adolescents and young adults.
“Mine is that I wear glasses, and without them I couldn’t drive or use my computer. I would be useless without them.”
Babies with “conventional” disabilities have to be diagnosed and treated in time, she said.
“There is a window of opportunity to treat youngsters’ problems in physical growth, sensory integration and motor abilities. Babies learn every day by connecting new nerve synapses. This means they can overcome many difficulties when they are infants. Children are like new immigrants who have to absorb new things. If disabled, they need to be helped and learn to help themselves,” said Beeri. “And you can’t treat a child and overcome disability unless the parents participate. It doesn’t have to be birth parent, by the way.”
She added that “medical institutions need cultural sensitivity, as neither Arabs nor ultra-Orthodox families can be helped without institutions considering what they need and their backgrounds. It will fail if they aren’t used to things and don’t get appropriate training. The family can’t do it alone either. There are great barriers within society and plenty of red tape, even though it wants residents to be well.
“It takes a village,” she said, “including health funds, the NII, welfare authorities, municipalities, transport systems welfare and educational systems. All have to work together, but unfortunately, each office has its own bureaucracy.”
ALTHOUGH ISRAEL falls short of providing all disabled and chronically ill children need and deserve, the US, with its much-less-efficient healthcare system, is not doing any better. Pediatrics Prof. Maria Britto, who is director of the Center for Innovation in Chronic Diseases at the Cincinnati hospital, told the conference that “only 53% of US chronically ill children get the care they need. Fewer than 30% of high-risk children even get flu shots to prevent complications.
“There is no magic bullet for improving the system, but we in Cincinnati have being trying in recent years to do this. We use an improvement model in which we focus on what changes we can make in the system to bring about change for the better.”
She explained that “if you look only at the kids in your clinic, you may miss those children whose parents don’t bring them in. We follow up children who do not come to appointments so they don’t fall between the cracks. The Ohio model was aimed at improving the system of delivering services, redefining roles of medical and paramedical workers, redistributing tasks, providing clinical case management for complex cases and giving care that families understand and fits their culture.”
The hospital center reorganized treatment for 30 different chronic disorders in children. The clinicians are happy with the reform because it makes it easier to do their work, Britto concluded.