Happy Birthday, Healthcare Reform!

23 03 2011

My amazing boy who has a “pre-existing condition”– autism– has insurance thanks to the hard work, and courage of good people like John Boccieri. I will always be thankful to him, his staff and his family for all they had to put up with because of people who didn’t understand the benefit of passing this into law.  Thank you!

This means more to me then you’ll ever know…






Yet Another Follow-Up on Daytrana

4 11 2010

J has been on the Daytrana patch for about 3 years now… we put it on before he wakes up and take it off as soon as homework is done in the evening. We’ve gone up on the dosage and gone back down and generally speaking it’s been good.

Lately, however, we’ve noticed that there is a bell curve on the effectiveness of Daytrana during the day.

  • 6:30 Patch goes on
  • 7:15 Rise and Shine!
  • 8:15 bus comes– pretty smooth ride to school
  • 9:00 all hell breaks loose
  • noon– zombie time to 2:30 ish
  • 2:30 very productive time of day– good conversations, descent focus
  • 4:00 home from school and homework– very smooth
  • 5:00 patch off– play time (usually computer, editing)
  • 7:00 my son comes back to life (hungry, funny kid!)
  • 10:00 bedtime

Not sure if there is a moral to this story but, I talked to his teacher and this is an accurate portrait of his day… so, I’m going to talk to J’s doctor and see about switching meds at Christmas Break so that if it doesn’t go well, we can go back to the tried and true-ish when school starts back up.

By the way– we have recently figured out that Band Aid brand blue no hurt antiseptic wash works great on the red-sore icky spot the patch’s adhesive leaves behind… Just thought you’d want to know.





Where’s The Parade?

23 09 2010

Today it became illegal for children with developmental disabilities to be discriminated against by health insurance companies– Yes! Mr. Biden! This IS a big F*#@%ing deal!!

But, where is the parade? Families celebrate silently and politicians who voted for it shy away from the topic unless they are defending their vote… the President has taken 6 months to start talking about it in earnest and republicans are lying about it. 

Insurance companies are having tantrums and refusing to play– that gets the attention of the media. Republicans are proclaiming they will repeal healthcare reform– that gets the attention of the media.

But where are the families who benefit from this law? Why are newspapers burying the story on page 5 when full page covers were given to protests prior to passage? Why are politicians campaign websites missing the healthcare link under “issues”?  The silence is deafening.

MY SON HAS INSURANCE TODAY BECAUSE OF HEALTHCARE REFORM!! Children with developmental disabilities– autism, down syndrome ( Sarah, that includes your son!)– can no longer be discriminated against! Short of a cure for autism, or truely effective treatment,  the end to healthcare discrimination is the biggest thing that can be done for children with autism (Autism Speaks)! So– where’s the parade?

I call upon those who voted for this law (Sherrod Brown and John Boccieri– MY  SON’S representatives)– for families who spent years fighting for this day– for teachers, doctors,therapists and advocates of children with developmental disabilities– for the media who championed this law– CELEBRATE!   This IS a Big F*#@%ing Deal!!





Federal Funding for Autism Research

3 04 2010

One in every 110 children has autism. One in 70 boys is affected. There are almost 750,000 children in the United States who test somewhere on the autism spectrum.

In FY 2008, Federal spending on autism research was just $177 Million and is expected to increase to $282 million in FY09 due to $89 million in one-time stimulus funds…   That’s less than $40.00 per person with autism in the United States. 

Federal Funding for Defense Research in FY2009: $6,692 Million

“During his campaign, President Obama committed to $1 billion of annual federal spending on autism by 2012. In October, he identified autism as one of his administration’s top three public health priorities. This new prevalence data must compel Congress to take action to fulfill the President’s promise in the upcoming FY 2011 budget process,” said Mark Roithmayr, President of Autism Speaks.

It’s time to write our elected officials… and hold them to their promise. http://www.usa.gov/Contact/Elected.shtml





Wearing Blue for World Autism Awareness Day

3 04 2010

Yesterday was World Autism Awareness Day (WAAD) as declared by the United Nations.

While watching the evening news, I noticed that MSNBC’s Chris Mathews was wearing an Autism Speaks puzzle piece so, I started bouncing around to see if any of the other networks were honoring this day… CNN’s John King was wearing blue but, his guest, Governor Strickland of Ohio was in red… On Fox Sheppard was in pink.

My family all wore blue, my Facebook friends wore blue and  the sky was even blue… but, the press (with the notable exception of Chris Mathews) didn’t acknowledge WAAD. And, I couldn’t find a single special on the topic.

It’s sad that this epidemic is a footnote– or rare news story– when 1 in 70 boys born today– 1 in 110 children– have autism. Surely they don’t think it’ll just go away if they ignore it…

Remember Swine Flu? Bird Flu? Just plain old regular flu? The numbers weren’t anywhere as high as autism’s and they led the news… funding for research and development of vaccines was astronomical but, the Epidemic that is Autism is relegated to a single line in the news casts if mentioned at all.

Don’t get me wrong– I appreciate any positive mention of accomplishment or discovery but, I wish that the attention given to comparatively minor outbreaks would be given to this disorder– and the boy who has autism that is dancing in my kitchen as I write.

When the 1 in 110 is enters the workforce or applies for government assistance they will notice… it will be the lead story… I hope it’s not too late for this generation of children with autism.

I challenge you to write a letter to the editor of your local paper, post a blog, write your elected officials and/or tell your Facebook friends what autism is, how it impacts those you love. Let’s talk about autism– let’s demand the attention this epidemic deserves!

The inclusion of behavioral health services and ending of  “pre-existing conditions” in the new Healthcare law are a really good start– and very appreciated by my family.

 As our Country moves on to Education reform let us advocate for increased and improved education for children with autism. Let’s insist that colleges  provide supports needed for those with autism to succeed. We, the people, the grassroots advocates for our children–can make a difference.





New Healthcare Law: GREAT for autism

2 04 2010

April is Autism Awareness Month and a time to talk about issues that Americans with autism and their families must face. Awkward social and language skills, sensory disintegration, misunderstandings perpetuated by movies like “Rainman,” parents’ guilt for wanting a cure that would change our children and the stigma of “imperfection” is only part of it– insurance companies discriminate against those with autism in a real and deliberate way.

Healthcare reform is personal for our family because our son has autism.

The Health Care and Education Affordability Reconciliation Act benefits Americans with autism not only by putting an end to “pre-existing conditions” and, in-effect, removing the term from our language but also provides for behavioral health treatments that are proven to have significant benefits for those with autism.

According to Autism Speaks, “…behavioral health treatment is included as part of the essential health benefits package required in certain health plans. Behavioral health treatments were added to ensure that people with autism are provided with insurance coverage of medically necessary, evidence-based behavioral treatments, such as applied behavior analysis (ABA) therapy. The reconciliation bill will require the following health plans to offer at least the essential benefits package: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange.”

While some say that this law doesn’t go far enough, it goes farther than any law has gone before in ending healthcare discrimination. This benefits not only children with autism but, middle aged men with heart conditions and grandmothers with diabetes.

Over the course of the past few weeks there have been significant threats made against our elected representatives because of their support of healthcare reform. These reprehensible threats have not been limited to adults who are public figures– their children have been threatened! Congressman Boccieri’s family is at risk because he stood up for our children– for the 1 in 70 boys born today with autism who cannot get healthcare insurance.

Now it’s our turn, the millions who benefit from John Boccieri’s personal and political sacrifices, to proudly stand with him because he believes, as we do, that pro-life doesn’t end at birth.