Combat Autism Act of 2006 by President Bush and reauthorized in 2011 by President Obama is suppose to fund autism research, services and resources. This includes many areas, such as funding the InterAgancy Autism Coordinating Committee (IACC), funding the Leadership in Neuro – Development & Disability (LEND) fellowship which now funds 43 universities across the United States, Fund parent to parent agencies in almost all of the states for parent awareness and education on autism’s signs and symptoms. It also funds the Autism Development Disability Monitoring Surveillance System (ADDM) through CDC (Center for Disease Control) to name just few of the programs it should do.
On the surface, it seems to do a lot and they all sound really good – right.
Here is my view as I always see things from a minority viewpoint.
First, Health Resources Services Administration (HRSA) which funds many of the CAA programs is at the very least sleeping at the wheel when it comes to assuring disparity is decreased, parents from communities of color are educated and learn about autism so that they can help their children. They are completely clueless when it comes to assuring that the 43 LEND fellows and community fellows are diverse. In fact, when I asked them they seemed baffled by the question. One even told me that she is black and works there and therefore how can there be disparity. I kid you not.
I did not know whether I should cry, laugh or party like it is 1999. I was so sad and frustrated by that answer that I now make it my business to keep complaining about HRSA so that they come out of their shell, comfortable heated/air conditioned office into the real world of disparity, consistent gap in minority autism families having access to the same services and therapies.
I am hopeful that one day the words of MLK will be true whereby we will all be judged by the content of our character not our color. The fact that a country with such wealth and prosperity has so much disparity for folks of color is very real, sad, and should wake all of us up.
HRSA writes and implements guidelines and policies for all state health departments to follow in order to get child and health maternal block grants, family to family voices grants, LEND fellowship grants, training tomorrow’s pediatricians and so much more. Now, if they wrote those guidelines in a way that assured equality and opportunities for minority community agencies and minority autism families – I am certain disparity and bias prejudice policies in state level public health would disappear. For example, HRSA can say (in order to get this grant – a grantee must collaborate with minority and under-served community based organization, it must show with clear data how it intends to outreach and educate those families. What they normally say is please do your best in diversity outreach and that is not good enough as it clearly has not worked.
I would ask that HRSA write clear messages and statements on diversity, sharing resources, collaboration and inclusion in their grant guidelines. Nothing less will do or will create an environment of equal opportunity. HRSA has to say what it means and mean what it says. If it is really serious in decreasing and eliminating autism disparity then practice your words and mean them. I must say – I am cautiously optimistic especially if we can connect the dots to politicians who fund HRSA and can ask for feedback. These are the same politicians that we all voted for.
Thanks!
Idil – Somali Autism Mom & Minority Advocate