The Services, Research and Policy which is a sub committee under IACC (Federal Autism Committee) met today. As you know, the co-chairs are Denise from AHRQ and David from Univ of PA. The writings of this blog are solely my opinions and no way or shape reflect IACC or SRP.
I am a member of this committee and first I must say that there are not enough good words to say about Dr. Mandell. I simply call him Dr. ManDastik. David has researched and published so many autism studies including many on autism disparity. He is such an amazing researcher, yet so humble and deeply listens to other’s views and ideas. What more can an autism mom who is very much interested in autism disparity ask for.
We had two topics to talk about today;
First, Adults and autism. What services are currently available, what services and resources are needed given that autism is a disorder that lasts a lifetime.
In this area, I would like a way for parents, families and care-givers to have a hub or a place with resources from transition from high school to college (if can) to employment (if can) to housing to recreational activities to support that is culturally and linguistically appropriate. There are many areas and sites to get information, but not one good place. NOW under ARC National has been funded by US. HHS, but I don’t think they have done a good job in connecting adults with autism and their families to appropriate support, services and resources.
The 2nd item on the agenda was disparity in under-served communities. This area – I am very much interested given that I am a minority person and the secretary picked me because of my interest in helping those that have been traditionally under-served.
As usual, David and Denise had great ideas in how to not just keep saying autism disparity exits, but how can we as a nation address this with concrete ideas and plans. My personal take is the problem lies with many of the US. HHS Federal agencies that keep funding state health departments despite their horrible inclusive records. In other words, HRSA, SAMHSA and others keep giving child and maternal health block grants, mental health grants, etc to the tune of hundreds of millions of dollars without any real way of measuring disparity reduction plan. In fact, many state health and human services departments have no plan other than tell us “we know we are not doing a good job reaching out to communities of color”. If I hear these meaningless words one more time, I am going to scream.
Yet, the funds keep coming year after year after year with no measurable success by state health departments. This means the problem is really the Federal agencies and their policy makers because insanity is doing the same-thing and expecting different results.
So, what can minority and under-served communities do? Well as the saying goes those in charge of these agencies get their funding from Congress who get hired by the people. Therefore, if people asked and demanded real change that makes a difference then it will happen. But if we keep voting for the same politicians who hire the same agency leaders who keep funding the same state agencies who keep ignoring our communities then we can only blame ourselves.
Vote Wisely and keep asking questions and demanding equal access for all children and people with autism regardless of their income, race and nationality.
We also talked about autism and co-occurring medical conditions which many folks were interested and have been advocating for especially SafeMinds and others. This is a tricky area because so many children with autism can and do have medical symptoms such as GI issues, Immune problems, etc. The problem is there are not much research on it, nor is there any proven medical interventions for it. I am hoping this area – IACC can recommend more adequate research funding as well as more awareness in pediatricians and family doctors. For example, when parents talk about their child’s medical symptoms – most doctors just brush that off and assume it is just autism behavior problems. The full IACC committee decided to have a subcommittee that will address this important topic. I am excited to see how this goes given that the new American Academy of Pediatrics Dr. Perrin acknowledged this huge problem when he visited IACC in July 2013.
Thanks!
Idil – Somali Autism Mom and Minority Advocate