There certainly is strong feelings about Autism Speaks (AS) as an organization, both good and bad. I'm glad for all the awareness they create. We're doing as much as that as we can ourselves. But what is AS doing for Mom and Dad Autism?
Many people get pretty heated when it is brought up that AS is putting their money towards research and nice salaries for company executives. Sure research is all well and good, BUT again, what about Mom and Dad? Learning about the causes of Autism are a bit of a moot point for parents financially strapped trying to help their children with Autism. Wouldn't it be nice if some organization was there for parents... NOW?
Easter Seals to the Rescue
Easter Seals has come out with a new study: Living with Autism Study. Here is some information about it:
Autism affects more than 1.5 million Americans and their families. Critical services and supports are needed to raise a child with autism, but they are few and far between.
In cooperation with the Autism Society of America, Easter Seals surveyed over 2,500 parents of children with autism and typically-developing children -- about daily life, relationships, independence, education, housing, employment, finances and health care.
The results gathered from our groundbreaking autism study paint a startling picture of the life-long fears and anxieties people with autism and their families face ... and the disparities among parents of children with autism as compared to parents of typically developing children:
• Nearly 80% are extremely or very concerned about their child’s independence as an adult.
• Only 14% feel that their child will be able to make life decisions.
• Only 17% think their child will make friends.
• They report that they’re “financially drowning,” with concerns for their child’s financial future.
Thanks to the generous support of MassMutual Financial Group, the findings are now available to you. As an Easter Seals national corporate partner and the study sponsor, MassMutual is committed to serving children and adults with autism through its exclusive SpecialCare program, a solution that gives families living with autism and other disabilities access to information, specialists, and financial strategies that can help improve their quality of life.
Millions of families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.
Easter Seals will use these findings to raise awareness of and advocate for the life-long services families living with autism desperately need.
Story and how to get the study link
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Wow, isn't it about time? I think many were hoping that this is what AS should have been doing years ago. But, finally someone is, Easter Seals. Looking at their website I find that they are like AS and do ask for donations. I'm not sure about the rest of you, but I'm ready to go to an Easter Seals version of Walk for Autism. What do you think?
Dad
(Here is a cute Ammon and Mary pictures with Santa, for those who've asked for cute pictures)
Thursday, December 18, 2008
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6 comments:
I've had issues with Autism Speaks as an organization for a long time and I'm so glad some other organization (besides Autism Bites!) gets it!
Just wanted to say my thought & prayers have been with all of you! I have one precious 6 yr old autistic son, Julian, and I'm a 50 yr old first-time mom, lol, so...wow!
I'd love for you to visit my blog at http://aboveandbeyondautism.blogspot.com
I learned long ago that AS is all about the money and cushy pay checks for execs. They pushed their way into Vermont to overshadow our local group's walk (on the SAME WEEKEND! have they no conscience or shame??? apparently not!) and because they are bigger, got the bulk of the fund raising money and took it all out of state, while families in our local area go without intervention, meds and other necessities because of poor insurance policies and lack of personal finances.
While it's great that ES is stepping up to the plate for us, it's a glaring shame that AS has fallen way short on this.
I'm so glad I found your site and blog. I've just started mine (http://thesamechild.blogspot.com)in connection with a booklet I wrote (Same Child, Different Day). We have two special needs kids, including our boy with autism. Though it's nothing like what you must go through, we can appreciate your lives (little house, little income, little minds of outsiders, etc.). With your permission, I'd like to post a link to your blog on mine.
By the way, we aren't advocates of AS or any other specific organization either. But we feel awareness is the key right now. Let us know what we can do to help.
~Jon
John, How was your Christmas? Last time I checked the Easter Seals, web site it did not offer local services for people with Autsim or services for the families- I'll have to check again. Thanks -Hope your Christmas was great!
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