CARA Changed to Autism CARES Act in Congress and Moves Along

As it is usual with all things autism, after CARA reauth HR 4631 was introduced – many autism advocates protested the name and some of the language. Many adults with autism who advocate for themselves stated the word combat was meant to combat them. And wrote many many many blogs and letters to Congress. On the other side of those that believe autism is caused by an environmental factors also protested and blogged high and low asking for more accountability and more environment research. Hence, the amendment and the language change of the current version of HR 4631. The new version also asks Sec of HHS to choose someone within HHS to oversee Federal autism issues which I think is a good idea, but doesn’t OARC already do that. 

The Senate also introduced a similar bill S-2449 by Sen Menendez (NJ-D) and Sen Enzi (WY-R).

In a nutshell, what this means is if you advocate hard enough – changes can happen and that is what makes this country the hope of humanity where democracy prevails. The cool and different thing in this is different advocacy agencies or folks can disagree fiercely and still manage to function normally if they happen to be in a committee. In other words, they can chew gum and walk at the same-time. By the same token, in hillbilly-land Minnesota that is not the case. It is very hard for autism advocacy people here to separate views and ideas on some areas while working together on other areas. I call that Minnesota nice – sorry, I meant Minnesota passive aggressive in a hillbilly kind of way. Just sayin my observations. 

In a related interesting op-ed was written by Congressman Posey from (FL-R) who from what I can tell in his view is a little confused about autism in general or HR-4631. As a huge supporter of Dr. Insel – Director of NIMH and Chair of IACC – I can’t remember when Dr. Insel has ever said he is stretched too thin to address autism. In fact, I have seen Dr. Insel listen and validate everyone in the autism community including those that disagree with him. Anyway, I thought that was interesting for a member of Congress to take such position. Usually, Congress members try to not take sides in the autism community as that is never a winning strategy. 

Now, let me state my view from an African American autism mom regarding the new amendment. I think it all looks good and if you advocate hard enough, your issues will get addressed. And, I applaud those that advocated for their concerns. What I am frustrated about is the lack of national minority advocates. Yes, I know I am a minority on IACC and have advocated on some national minority issues, but I am just a mom after all. Where the heck is Congressional Black Caucus or the Hispanic Caucus in this? They are missing in action. Imagine if this new amendment also included specific language in decreasing autism disparity in diagnoses and treatment for minority ASD children and adults. Imagine if this amendment or another one addressed the cost of autism disparity and how HRSA seems to be moving very slowly and unproductive. HRSA – Health Resources & Services Administration is the agency within HHS to assure all families are aware and understand services and available resources. It is easier to walk needles on fire than to advocate at HRSA. I kid you not. 

Imagine if GAO (Government Accountability Office) was asked by CBC (Congressional Black Caucus) to look into autism disparity and come up with ways of reducing disparity cost and more effective equal access to care and services. Imagine if Congressman Cummings, Davis, etc actually wrote policies to decrease autism disparity instead of putting on a good show in committees and saying blah blah. Oh please, I know Cummings is a civil rights icon from the 60’s but in this century – it is policies that make a difference not just protesting. I get it, we stand on the shoulders of people like him who fought for equal rights for Blacks and other minorities, but I have contacted his office more times than I can count and they only refer to his civil rights days. Instead they (his health policy advisers) need to write different and better health disparity reducing policies and assure it passes in Congress – period. And, all I can get from Rep Davis’s health policy staff is blah blah and more blah. 

I suppose if we look at the glass half full, IACC can add specific disparity reduction research into their objectives rather than just updating them, I think we should change the objectives to reflect today’s autism needs. For instance, an objective of looking into why autism diagnoses and treatment is years late for racial minority kids then coming up with recommendations would be very helpful. I hope Dr. Mandell is funded for this – I think he is fantastic or as I like to call him Dr. Mandastik!

Anyway, no I will not be advocating for these items as fun as they sound, my state and national advocacy levels are winding down as that was never my plan to stay in this forever. 

It is worth noting that two Congressmen Ellison and Peterson (who is a member of ACC (Autism Congressional Caucus) have co-sponsored HF-4631 and I had nothing to with it this time which is awesome. On the other hand, Sen. Franken and Sen Amy K are still sleeping at the wheel of autism including in the Somali community. Personally, I support the new language of this bill and I would encourage those advocating to contact Rep Cantor to put it on the house floor for votes and Sen Harkin to move the senate version faster, then Reed has to put on the schedule for Senate floor vote and President Obama has to sign it. It can seem a lot, but all of these offices are aware of this legislation and my feeling is – it will move through Congress quickly and signed by the President before the deadline of Sept 30th 2014. 

Now, there are a few autism bloggers and advocates who are still against this bill, they don’t also have a different version or language – in fact I think everyone except minority autism families got what they wanted or at least some of what they wanted. Anyway, such is autism life – never agree on most things. 

Update: It looks like S-2449 has more co-authors including Sen Franken (MN-D). My guess is they are feeling the heat of needing MN autism votes especially those from the Somali community. I say it is a little too late and too lame. If Franken really cared about autism in our community as he has been saying around Somali shops – then he should add autism research that looks in cause when different ethnic communities are impacted more. He could also add more inclusive and diversity outreach by offering an amendment in the Senate . So far – I don’t see that. 

There are additional two Minnesota Congressmen added to HR 4631 – Kline (MN R) Walz (MN D
). The Senate version S2449 is up for a hearing tomorrow June 25th, 2014 at HELP (Health, Education, Labor and Pension) Committee in which Franken sits on. My gut feeling is that other than co-sponsoring, he won’t offer any amendments to help the Somali autism parents he claims to care about. For example, adding specific language for research in ethnic communities where autism is higher or more severe. Adding specific language of research looking into how to decrease autism racial disparity in access and intervention. And, adding specific language of HHS increasing racial autism providers and researchers. If he does – I might party like it was 1999. I won’t hold my breath. And, this is the guy Ka Joog toddlers thought was important to take speaking time in Somali day on June 20, 2014. Are you kidding me? The only time Franken comes to Somali community is election time. Where the heck has he been for the last six years? Sadly, no one in our gullible community asks him. 

Congressional Black Caucus website: (CBC needs to not just complain of disparity, but write different policies that reduce and eradicate racial disparity is my humble little opinion)

Thanks!

Above words do not reflect any committee, agency or candidate.

Idil – Somali Autism Mom & Minority Advocate