We all know that regularly updating your materials, whether you are talking about a website, a Facebook page, a talk show, a crime or a missing persons case, or anything you work on, is crucial and adds greatly to one's credibility. One cannot expect a loyal following if one does not work to keep these supporters "in the loop" about what one does. And so I have applied this not only to my Facebook materials but also to my Change.org petition for autism, to be more inclusive and to spell out to supporters, would-be supporters and to our government, exactly what I would like this petition to do and the sources of the funds which I am requesting. For, when I created it, I was aware that many people would, rightfully, be wondering, "Where are the funds going to come from? Do they even exist? And if so, how would such programs be implemented? And what about services for children and teens that are in danger of being cut in the name of "balancing the budget"? My hope is to go a long way toward answering these questions in this blog. I believe that you will be more motivated to support the petition.
First of all, where will all the funds I call for come from? They must come from somewhere. First of all, it has been brought to my attention that fund had been set aside for services for autism, and, to this day, this legislation for autism has not yet been fully funded. Let me provide some history, according to Wikipedia. On December 19, 2006, President George W. Bush signed into law the Combating Autism Act of 2006. This bill was meant to provide a package of research services and diagnostic services for children and to detect autism in toddlers, among other services. The funds for thse services were never appropriated, though. On September 30, 2011, President Obama added his signature to the Combating Autism Re-Authorization Act of 2011 (H. R. 2005). You can read the text for this, in pdf format, here: http://www.gpo.gov/fdsys/pkg/BILLS-112hr2005ih/pdf/BILLS-112hr2005ih.pdf. There were $231 million that were supposed to be appropriated for different autism efforts. However, even though the Combating Autism Act was re-authorized, to this day, it has not been fully funded, according to Politifact, a website full of "fact-checking" information about politicians and legislation (http://politifact.com/truth-o-meter/promises/obameter/promise/82/fully-fund-the-combating-autism-act-and-federal-au/. Therefore, my petition calls for these $231 million. already set aside for autism, to fully fund, and appropriate, the services that they were meant to fund in the first place. For this reason, my petition has become more inclusive and, because of the unfunded autism legislation, my petition calls for the protection of those services that are meant to serve autistic people age 21 and under, also. This makes my petition more inclusive and should attract support from many people, including those who young children who are diagnosed with autism and are NOT thinking in terms of them becoming adults. It should also attract more support from many outside the autism community, who still think only of children when they hear the word "autism." For this reason, I have slightly tweaked my petition title from "1,000,000 People for Better lives For Adults With Autism" to "1,000,000 People For Better Lives For All Persons With Autism." This gives all of you who are reading this, even if you have signed this petition (and I thank you for that!) all the more reason and "ammo" to freely circulate this petition, whether by email, Facebook, Twitter, online chat, other social networks and yes, word-of-mouth, through my shortened URL: http://tiny.cc/mrsahw.
The mission of my mission has not changed one bit and I still call for all those services for adults with autism, 21 and over, who have little or no access to these services. These services simply do not exist or, if they do, they are typically available through private nonprofits and are unaffordable to most adults. Yes, I'm sure there are exceptions. In my petition, I call for funds to be offered to EXISTING services for those with developmental disabilities who serve those with autism. Typically, such services are directed to children, teens and maybe young adults, to age 21. Sadly, it is like there is no life for any adult with autism who passes the age of 21. Want a diagnosis, if only to find answers about your unusual past? Too bad, because, unless you are fortunate to live in an area where a qualified professional diagnoses adults or have the time and money to go to such a professional, you are basically doomed. You will not know the relief of a diagnosis, a community and possible services. This sad fact also extends to poor and many minority people, children AND adults and I hope that the exclusion of many less-fortunate children can be addressed through the funding of the Combating Autism Re-Authorization Act of 2011. And where would the funds for all the services that I outline would come? Good question! According to an article on the website for the nonprofit, Autism Speaks, there are cuts that are scheduled in January of 2013, and these cuts include services for autism. And, according to the last paragraph of this recent article, $238 million were set aside for autism initiatives. It is unclear what these autism projects were meant to do, and they expired in September 30, 2012, probably because of the Election. In this petition, I call for the re-newal of these expired funds and then I call for these same $238 million to be re-allocated to the services and programs for adults with autism that have been calling from the creation of my petition (http://autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research). The point of the article was deep concern about upcoming cuts, but I discovered that there are $238 million that, taken together with the $231 million called for in the Combating Autism Re-Authorization Act, means that $469 million do ALREADY EXIST for autism! My petition calls for these existing funds to be re-newed, appropriated and then re-allocated to include the services for adults with autism which I have called for from the beginning.
Yes, I know that, as I write this, our Election in the USA is over. We do know, at this point, who is occuping the White House for the next four years and we do know what the new Congress is looking like or who are filling many sets which were, not long ago, "up for grabs." My signature goal was not be reached by the Election and I know that President Obama and a new Congress will be the ones who will need to re-new, appropriate and then re-allocate the EXISTING funds mentioned in my petition text, to improve life for ALL people with autism, of all ages, at all levels of function, diagnosed and undiagnosed. Yes, now there are many in Washington and those who aspire to be in power, who want to make hurtful cuts to EXISTING programs and services across-the-board and autism is only one target of these proposed cuts. And I know that there are controversies over proposed changes in the DSM-5 and this includes the autism diagnosis. However, even with these realities and challenges, we owe it all people with autism and to ourselves, as a society, to try. Autism affects all of us and when a people group remains unwelcome, misunderstood, and underserved, this affects us all.
Yesterday, as I write this, many in the autism community and myself are reeling from the things that many said in yesterday's Congressional Autism Hearings. In listening to the hearings for three hours, in the background, via C-SPAN 3, I was not only saddened but angry at what our politicians exhibited what could best be called condescending, paternalistic, uninformed and insulting toward persons with autism. I heard references to autism as a "terrible disease and as an "epidemic" that needed to be "curtailed"! Adults with autism were referred to as "burdens to their families and society" but besides a few uch references, nothing else was said about providing these adults with services. I found much of those two hours of hearings almost unbearable to listen to. The third hour hearings were better as it featured autism nonprofit CEOs but the attitudes some of them exhibited were offensive to me. For example, one CEO called for services to "make autistic adults productive so that they will not be burdens on society." Two CEO's of self-advocacy nonprofits, Ari Ne'man and Micheal John Carley, spoke and in my humble opinion, their testimones were by far the ones that made the most sense as they were from a self-advocacy perspective and from two CEOs diagnosed on the autism spectrum themselves and which they have made public.
Though there were two "autistic voices" at these hearings, which is great progress, please bear in mind that Michael John Carley and Ari Ne'man are among "the lucky ones" as they both are the first to tell you. Most autistic adults, whatever their level of function, do not know the quality of life that these two men know, they may need services that these two men do not need and many struggle with unemployement, secondary emotional problems, family crises, divorce and even worse, even incarceration or homelessness. I know that many people, in AND out of the autism community, are calling for funds to focus on research and "finding causes and the cure." Some of them, with more resources and bigger "voices" than mine, are lobbying Congress for this purpose. I realize that research has its own valid place and is needed to find better ways to diagnose autism and to provide effective services for autistic people. But my petition focuses on comprehensive services for all underserved persons with autism, whatever their age or ability to pay. These hearings only underscore the need for enthusiastic support for a petition like mine that calls for such coverage; the outcome of yesterday's hearings is most uncertain and unless you are okay with autism funds to go mostly for research and early intervention (fine as these are), active and ongoing circulation of my Change.org petition is wise.
My petition can be found at the Change.org site: http://tiny.cc/mrsahw. I shortened this link to make it much easier to remember and to share than the original Change.org URL link is. My hope is that, once you have signed this petition, you will share it in email messages, send it or post it on Facebook, tweet it, share it through real-time online chats, and through any other social network at your disposal. And do not leave out the traditional word-of-mouth.
http://caringenoughtomakeadifference.com. You can find my petition on a widget at this site, which is under construction, and it can be signed there. There are also share options for this widget and my hope is that you will share this site, especially with those in your life who do not use social networks.
https://www.facebook.com/AutismAffectsUsAllPleaseSignKeepSharingThePetition
If you are a Facebook user, I recommend that you visit this page, "like" it (so its contents will stream into your Newsfeed), and you will find that my petition should be easily found and shared through this page.
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