Organizing against autism

The financial and educational iniquities in child and adult autism care must be at the core of our actions.

By JOSHUA WEINSTEIN
ICare4autism CEO Dr. Joshua Weinstein (photo credit: Edna Ramot/ICare4autism)
ICare4autism CEO Dr. Joshua Weinstein
(photo credit: Edna Ramot/ICare4autism)
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.
In-depth 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 these families.
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.
In the 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.”
Such a 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 ministries.
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.
True 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 institutions.
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 list.
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 society.
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 prevention.
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 few decades.
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 children.
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.