|Photo by: Edna Ramot/ICare4autism|
Organizing against autism
By JOSHUA WEINSTEIN
The financial and educational iniquities in child and adult autism care must be at the core of our actions.
The recent report by the State Comptroller’s office on the Israeli attitudes
towards autism was a wake-up for all of us who are working passionately to
better the lives of families affected by this disorder.
independent research that has been conducted in Israel has painted a very
similar picture: parents are confused and valuable resources are being wasted
due to a lack of coordination among organizations fighting for the rights of
We can do better. While no solution can be imported from
abroad without modifying it to better fit the Israeli system, a central Centers
for Disease Control and Prevention (CDC) like the one that exists in The United
States will go a long way toward rectifying the current situation.
US, the CDC serves as a centralized official body where all data relating to
autism is gathered. This allows both researchers and families to access the
information they need without the headache of dealing with a myriad of
governmental bureaucracies and agencies.
As the CDC states in its mission
statement on autism: “[The] CDC is committed to continuing to provide essential
data on ASDs, search for risk factors and causes, and develop resources that
help identify children with ASDS as early as possible.”
centralized body is exactly what we are lacking here. An Israeli CDC will
finally have the ability to coordinate the long-term treatment of autistic
children under one central agency in conjunction with all
Under the current system, parents of autistic children begin
must first begin dealing with the Health Ministry.
When their child is
old enough to enter the school system, parents are faced with a whole new set of
rules and regulations at the Education Ministry.
After the Education
Ministry, the Welfare and Social Services Ministry and the National Insurance
Institute are introduced to the plethora of government agendas.
parental involvement is the key to successful autism programming and activities,
but the frustrated parents I have spoken with feel they are unable to fulfill
their child’s personal needs while keeping up with the constantly changing rules
and regulations of these agencies.
Those of us who deal regularly with
children affected by autism understand how important it is to teach good
communications skills. This lesson must be applied on a communal level as there
is an added importance for communication among the community of parents and
Governmental ministries and private foundations should not
be unreachable institutions with multiple voicemail and phone options that lead
nowhere and drain finances.
Similarly to the US CDC, an Israeli
counterpart should collaborate and provide the tools that people and communities
need to protect their health. The Israeli CDC should promote health, prevention
of disease, injury and disability.
Some of the most important areas of
operation should be a Disability and Health Data System, a Center for Global
Health, a Laboratory Science, Policy and Practice Program Office and a National
Center for Health Statistics and Data.
This is only a partial
Most importantly, the Israeli CDC should provide a “one-stop shop”
for all those who need to better understand any given disease in a serious
manner and serve as a depository of data and tools needed to better serve our
Only by having such a clearly stated mission will the Israeli
CDC be equipped to monitor the state of Israeli healthcare, detect and
investigate health problems, and conduct research to enhance
We must also be forward-thinking and work to develop and
advocate sound public health policies and then implement prevention strategies
for a variety of diseases. Finally, we must provide leadership and training to a
future generation of healthcare leaders so that we can hopefully reverse the
trend on autism and other diseases that have been on the up-tick over the past
An official governmental body, like a CDC, will do much to
begin addressing these problems. However, strong and able partners are needed in
the non-profit sector to augment this effort. Only through a true partnership
can our society address all of the issues raised in the Comptroller’s report
such as housing, daycare, licensing for schools, placement for autistic
children, and hospitalization.
There are already experts who are ready,
willing and able to help convene a meeting with all Israeli ministries to give
guidance on this issue. These experts have research, resources and models in
place for databases and other necessities. The government should coordinate with
them to integrate and consolidate information and provide an international
networking hub for autism providers.
The Comptroller’s report is an
excellent first step in this process. These issues being brought to light on
multiple fronts is a need that has been a long time coming. The financial and
educational iniquities in child and adult autism care must be at the core of our
actions. We hope that this report will serve as a catalyst in bringing about the
kind of climate in which we can help not only children with autism and their
families but all other individuals dealing with disabilities. An Israeli CDC
will create a unified agency for all health issues and disabilities providing
stability and continuity in the lives of families, parents and
The writer,a PhD, is the founder and president of I C are4Autism (www.icare4autism.org), an international organization that aims to
serve as a catalyst for autism-related research worldwide.