The value of a disabled child

At Alyn Hospital’s recent conference on pediatric rehabilitation, experts showed that every life has meaning and value.

Occupational therapist Naomi Geffen 370 (photo credit: Judy Siegel-Itzkovich)
Occupational therapist Naomi Geffen 370
(photo credit: Judy Siegel-Itzkovich)
What is the life of a physically disabled child worth? It’s a cruel, but important question for the devoted people who work in pediatric rehabilitation as well as Treasury officials who want to cut costs and medical ethicists who think about what is morally right.
The annual financial cost of taking care of an Israeli child with cerebral palsy, muscular dystrophy or other disabilities is around $50,000. The US Environmental Protection Agency calculated that the “statistical value” of a coal miner, calculated by how much the government would invest in preventing him from dying in a work accident, is $6.1 million. Governments are willing to spend $129,000 a year to keep a kidney-failure patient alive using dialysis to clean their blood.
According to Dr. Eliezer Be’eri, deputy director-general of Jerusalem’s Alyn Hospital, “taking care of a child in our pediatric rehabilitation hospital is worthwhile for society. But I can’t look at people as numbers. It’s easy to lose our humanity. Money is not the only thing to be considered. Our humanity is at risk. What are all our resources worth if we are not humane?”
“A brain-damaged child will not contribute to society, but I must take care of him because he’s a human being. I have to do it not because society might one day benefit from him. Even though economic benefits are important, expenses mustn’t determine if it’s ‘worthwhile’ to treat such a child. We look at their humanity, not their usefulness. It strengthens our own humanity.”
Be’eri was one of the speakers at Alyn’s First Conference on Pediatric Rehabilitation, which was held recently at Jerusalem’s Crowne Plaza Hotel and special workshop sessions at the hospital in the capital’s Kiryat Hayovel neighborhood.
The multidisciplinary medical institution, the only one of its kind in Israel and one of the few in the world, is directed by Dr. Maurit Beeri (no relation to Eliezer) and treats hundreds of children and teenagers as inpatients and outpatients. It has both regular rehabilitation and respiratory rehabilitation departments and a medical-educational rehab department for children as young as six months old. A rehabilitative day care center is available for infants and toddlers up to the age of three years, while kindergartens and a school serve children up to age 21.
Alyn’s outpatient clinics specialize in pediatric orthopedics, treatment of spasticity, control of elimination, wheelchairs and other devices and prenatal counseling. Multidisciplinary clinics focus on cerebral palsy, eating disorders, brain damage, spina bifida and spinal cord injuries, neuromuscular disorders and breathing problems. Its staff include physicians, nurses, physiotherapists, occupational therapists, psychologists, social workers, clinical communications specialists and teachers.
Beeri insists on keeping the hospital campus beautiful, with well-kept gardens and a riot of color everywhere. “We want the children, their parents, the staff and visitors to feel at home,” she says.
And for some, it is a home. One seriously disabled girl named Mirale, who lived most of her childhood at the hospital, got married, lives in the community, works as a graphic artist and gave birth to a healthy baby.
PROF. LAWRENCE Vogel, chief of pediatrics and medical director of the spinal cord injury program at Shriners Hospital for Children in Chicago, was a foreign guest speaker at the Alyn conference. A pediatrics professor at Rush Medical College and president of the American Spinal Injury Association, he was making his first-ever visit to Israel.
Although there is a North American network of Shriners Hospitals for Children, established by a fraternity based on fellowship and the Masonic principle of brotherly love, his own medical institution deals mostly with spinal injury, plastic surgery and treating cleft palate deformities. It is not as comprehensive as Alyn, and as he was taken on a tour by Beeri, he was very impressed by its services, staff and scope.
“Alyn, Israel and Jerusalem are amazing,” he said. ”Such a melting [pot] of cultures and religions. And you see it here in the hospital as well.”
The Shriners hospital used to offer all treatment free to its young patients, but due budgetary problems two years ago it had to start charging health insurance companies for services. There is also a lot of red tape involved.
“If the family can’t afford care, however, we don’t charge. We won’t turn a needy patient away, even if he doesn’t have health insurance.”
Fortunately, thanks to Israel’s national health insurance and Alyn donors, the Jerusalem pediatric rehabilitation hospital’s care is free. Alyn does not itself perform surgery; young patients are referred to general hospitals.
Shriners does surgery in 80 percent of cases. Its staff still see quite a lot of children with spina bifida, a devastating neural-tube disorder whose prevalence is significantly reduced if the mother takes enough folic acid before pregnancy.
“It seems that some women still don’t take the pill even though it is highly recommended for women of fertile age,” Vogel said.
His hospital, where he has worked for nearly 35 years, doesn’t have a rehabilitation center like Alyn’s.
“We treat children with congenital disease, victims of road accidents and plenty of young people who were victims of violence – usually guns but occasionally knives. I’m not aware of us having victims of terror,” he said.
Shriners in Chicago (quite a violence city compared to New York) “doesn’t have any terror attack victims,” he told The Jerusalem Post in an interview. Since there are not many US institutions like Vogel’s, patients come to the hospital from as far as Texas, Louisiana and Oklahoma.
“They may come every six months and stay for a week or so for ‘tuneups’ and checkups.”
Vogel said at the conference that the ultimate measure of success in caring for children with spinal injuries “is that they become adults with productive and satisfying lives. We hope they will be healthy physically and emotionally, live independently, have mobility and autonomy, be employed, participate fully in their communities and pursue satisfying lives. Child development progresses in stages, with each of them [being] preparation for the next stage.”
Ensuring quality of life, he continued, “is the overarching goal. It’s the same challenge for all children, not just those with special needs. Adults have a choice and obligations, but children may not have much of a choice; it all depends on their parents.”
Vogel noted that “there has been a profound change in dealing with rehabilitation. It went from fixing impairments to focusing on participation and life satisfaction. We do things for a bigger purpose, transitioned from short-term to long-term goals. Today, children with cerebral palsy and muscular dystrophy live much longer than they used to, so we even have to look at aging issues. Aging starts moment you’re conceived.”
Research by him and his Shriner colleagues has found that the educational level among former patients is relatively high, but they have a lower rate of marriage and much lower rate of employment than the general population. About 80% of their patients suffer from some type of chronic pain. Many also have other medical problems, from pressure sores to incontinence and heart and respiratory disease, as well as emotional problems like depression. So they need help.
A FASCINATING workshop held at the hospital was headed by Naomi Geffen, an Alyn deputy director-general and veteran occupational therapist who has much expertise in suiting disabled children with motorized “vehicles.”
Incredibly, the staff can teach children who haven’t yet reached their first birthday how to maneuver themselves about and participate in the world instead of just staring at the ceiling or out a window.
Geffen and fellow Alyn occupational therapist Vardit Kindler demonstrated joysticks, switches, proximity devices that a child doesn’t even have to touch and others that can be activated by the head or chin, sticking a finger in a cup or even by licking. As brain development is so rapid even before a child’s first birthday, getting them mobile is critical, they said.
More than a dozen of different types and sizes of motorized wheelchairs and carts that it built or purchased with money from the National Insurance Institute are lent out to families for up to five months so the children can practice with them at home in a natural setting. Then, when the Health Ministry agrees to consider allocating money to help them purchase their own motorized wheelchair or cart, the families and therapists are able to show what the children can do.
Kids as young as three have been supplied with mobile devices at the expense of the Health Ministry, but as money is short, there are currently 10 severely disabled children waiting in the ministry queue for allocations.
The occupational therapists noted that motorized vehicles cause the disabled children to be more independent, feel more control, participate in activities and have better motor and sensory development.
Lack of movement leads to helplessness, passivity, difficulty in controlling the senses and even a fear of heights.
But the process of getting a disabled toddler to learn how to move their heads, fingers, legs and other parts of their bodies to click a switch, move a joystick or even lean near a sensor is very tedious and slow. Yet very rewarding. Children who can move nothing else can use their tongue to operate a motorized wheelchair; the devices are saliva- proof. Even a child with an IQ of 50 can learn how to maneuver a battery-operated wheelchair or cart, they said.
Children who were able only to look ahead can suddenly view their world 360 degrees around, giving them a different perspective on life.
“It’s very important to start gradually and not fail. If they do, they will be discouraged about trying again for long time.”
Alyn staffers can program motorized vehicles to drive relatively fast or slow depending on the age and abilities of the child. If they jerk into action too suddenly, the child can fall. Programming also switches the joystick from right to left or from forwards to backwards if that is most comfortable for the young driver.
She gives as an example a five-year-old boy from Kiryat Malachi who is transported to Alyn every day.
“He has a heart defect and delayed development, and he’s connected to a ventilator.
We trained him and loaned him a motorized vehicle that he took home for the summer vacation. He came back and was so good at maneuvering himself that his family’s application to the Health Ministry for a wheelchair of his own was quickly accepted. He is doing wonderfully.”
The common expression of “confined to a wheelchair” is not apt for these children.
“The vehicles make disabled children mobile. They change their life and their development,” concluded Geffen.