alright, so by now we all heard that President Obama signed the Autism Cares Act into law on Friday August 8th, 2014. This law extends IACC (Interagency Autism Coordinating Committee) which I serve as a public member nominated by Previous Sec of U.S HHS Sebelius. It also continues many Federal autism programs in various Federal agencies, such as HRSA, CDC’s ADDM sites, NIH’s research activities and so much more.
This new act is good for five years which is more than the last act that is to sunset Sept 30th, 2014. There are many important and good things within this bi-partisan legislation. First, it has autism related services, training and information must be culturally competent. Let’s explore what this means. For starters, main stream agencies that usually hog the services can no longer do that and must provide their services and information based on the families culture and understanding. For example – when Pacer does kazilian webinars for mainstream autism families and nothing for minorities will no longer be acceptable. This means HRSA which usually funds these agencies including state health departments must be vigil in assuring there is equity and equal access to information and resources. It also means state health departments such as MDH that usually just give the HRSA funds to local public health counties must find a way to assure the counties are doing their work in a manner that is culturally competent.
Another good and new thing this act adds is services for young adults and adolescents which are sadly often forgotten as if autism goes away after a child reaches teen or adult. Autism is a life long disorder and services and resources including higher education, employment and housing must be part of the strategic plan. This act also has a person to be appointed by U.S HHS as an autism appointee which I think is fantastic. Plus, this act expands the public members by including members nominated by Congress which I also think is a good idea given IACC plan goes to Congress.
Overall – it is a good legislation and a step in the right direction. Sadly, as I said in my blog before – my Federal advocacy ends here by Sept 30th 2014 when current congressional act expires. If there was a person that I hope replaces me would be Anne Harrington. Anne in my opinion is the perfect and complete package. She is Caucasian, has an adopted African-American son with autism, has worked in the education system for years, is a policy advocate and a trained autism therapist in developmental behavior which is most often missing in IACC membership.
I think Anne would be perfect. Plus she is the most down to earth, humble yet so knowledgeable person I have ever met. Anne is always in the corner of autism families irrespective of their race, color and socio-economic status. If I could suggest one person, it would be Anne.
Finally, if you ever wondered how this autism act of 2006, 2011 and now 2014 got started. It was started by parents from NJ who went to Congressman Smith from NJ. Smith wrote this bill back then with Congressman Doyle and they have been a champion for our families ever since then. The point being autism parents have such a huge impact on policy and change, especially when combined with thoughtful and sincere legislators. I met Congressman Smith once in 2012 and when he speaks about autism, his body language really says more than his words. He cares and he means what he says and does what he promises.
Here is my friend Matt’s blog post on this new bill. Here is the White House Blog on it.
As usual, above words do not represent any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate