Dr. Joav Merrick says that once the Israeli government gets children and adults with developmental disabilities into its health care system, it usually does a pretty good job of caring for them.
The trouble is that, aside from the roughly ‘5,000 developmentally disabled people that the government helps through in-patient or outpatient facilities, Israel really has no clear idea how many of its citizens have such disabilities, what the spectrum of those disabilities is, and how Israelis suffering from those disabilities best respond to what treatments.
"The problem is we have no data," said Merrick the medical director for Israel’s Ministry of Social Affairs, which oversees care for the country’s developmentally and mentally handicapped populations.
But Merrick wasn’t in town, speaking with The Jewish Standard last week at Teaneck’s Lazy Bean Caf?, as a member of the Israeli government.
He was here trying to raise money to fund the National Institute of Child Health and Human Development in Israel.
The NICH, a non-governmental organization that he started in 1999 is aimed at collecting the research data that Merrick’s government ministry needs to best treat its citizens.
At the coffee shop, he rattles off a list of important questions that the Israelis need to answer about their developmentally disabled population: "How many people are there really? What kind of therapies are helping them? What methods are not working? How old are these people? How many are being abused?" he asks among other questions.
But it’s also designed to put Israel on the map of research data in the field of developmentally disabled.
The NICH is made up of a number of coalitions of doctors not just in Israel at such institutions as Ben-Gurion University and Tel Aviv University, but also of doctors at teaching hospitals and medical schools throughout the world.
These doctors have published more than 800 papers through the NICH since its inception.
Much of the work that the NICH has done has built upon existing studies. For instance, the group took a study done in 1999 about the effects of aging on people with Down Syndrome. The initial study looked at 1,400 American patients. The NICH then looked at an additional ‘,883.
Only, when the Americans did their research, they worked with a huge grant and with dozens of doctors. When Merrick’s handful of doctors did their research, they worked strictly as volunteers.
Trained in Denmark, Merrick, who moved to Israel in 1991, is trying to end that. He is trying to find money to get a central office and perhaps to be able to hire a full time staff or at least one administrator, as now he does all of the administrative work at night, for no salary, after he is done with his day job.
He estimates that a $10 million endowment would allow him to do so, but as of last week, after spending several days traveling the northeastern United States trying to drum up support, he said that he found the American Jewish community preoccupied with fund-raising for Israel’s military conflict with Lebanon and its aftermath.
For more information about the Institute, visit www.nichd-israel.com.