Sharron Angle, Nevada Tea Party, Mocks Autism

23 09 2010

Here is the link to write Ms. Angle a little note:

Here is the link to contribute to Harry Reid:

This woman has picked a fight with the wrong people… let’s let her 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!!

A Little Bit of Normalcy

23 09 2010

Autism is no longer an uninsurable pre-existing condition

For well over a year we fought for the opportunity to pay for insurance for our son who has, until this month– been denied on the basis of his “pre-existing condition”. Jay has autism. He’s healthy and happy. And now… he has insurance!

I am thankful to so many who had a part in making this happen… to family and friends… to politicians and insurance companies who gave me lip service and made me angry… but, it really came down to our Congressman– John Boccieri, who took a big political chance… whose family endured threats and as recently as last week was on the front page of the NY Times with a man’s finger in his face… He voted for healthcare reform.

I don’t believe that when President Obama signed HCR he had any thought of the children with autism who were denied this often taken for granted thing– but, his signature gave my son a little piece of normalcy. For that I will always be thankful.

The Republicans have sworn to work for the repeal of HCR… This would be a huge step backwards… and, we can not allow it to happen.  Vote. Stand up for those who, like Congressman Boccieri, have stood up for our kids!

Tonight, my son goes to bed with insurance. And, I can sleep knowing that what I did mattered.

Social Advocacy: Giving my son a voice

23 05 2010

Parents of children with exceptionalities (aka disabilities) see things that parents of the “normal” kids don’t notice –the volume of a movie, the ceiling fan, the florescent light that strobes,  the teacher who only explains verbally… We can complain– or we can educate.

Business owners, neighbors, family, friends, teachers don’t mean any harm (generally speaking) — they just don’t know any better. It’s important for us to educate these folks so that change happens.

I never complain without offering to help solve the problem– If I offer to train their staff at no cost and they don’t take me up on it they don’t have an excuse… and I have more leverage if I need to lodge another complaint.

There is no silver bullet… and unfortunately, education hasn’t always worked for me… I confess that I have filled complaints with the ADA when education has failed but it’s always been last resort.

Remember to be polite, know your facts, ask questions, be persistent and make change!

Political Advocacy: Giving my son a voice

22 05 2010

About a year and a half ago my husband went back to school and we found ourselves needing to purchase private insurance.  It never occurred to me that my son who has autism would be denied on that basis– but, he was–by more companies that I can count. I got mad and started the fight for change.

I made phone calls, sent emails, crashed meetings where I knew my elected officials were going to be, wrote letters to the editor, and spoke out whenever I could find someone who would listen. I emailed all my friends and family members asking them to write letters asking for insurance reform… I fought for my kid! 

As proposed reform laws moved to the back burner in my home State, I moved on to advocating on a Federal level. I told my story over and over again. I watched, read and researched. I followed the progress of Healthcare Reform through House and Senate continuing to make calls, send emails asking for a YES vote…

One evening in March  I got a call from Organizing for America asking that my son and I stand with my Congressman as he announced his support of healthcare reform and promised a yes-vote. We were there when our efforts paid off. We were able to thank him in person for his support– for helping our son.

There are lots of things to advocate for– laws, funding; big-ticket, high-profile, high impact needs– and, ones that improve the lives of future generations as well as day to day needs our children have for normalcy– accomodations at the YMCA, IEPs, reasonable volume at the movies… The more we educate our communities and our Nation the lower the stigma and higher the accomodations.

We need to learn how to effectively advocate so that our time and our efforts have maximum effect. Here are a few tips to get you started:

1. Be polite. Your attitude will transfer to the cause you are advocating for. Remember that the person you’re talking to is usually not the person who is going to cast the vote and you want that person to give your cause a favorable slant when speaking with the vote-caster. Practice the Golden Rule.

2. Do your research! Know what you’re talking about before you dial. Back up your claims with statistics– and use them. I’ve always found it helpful to have a cheat-sheet in front of me.

3. Ask questions— How does Senator/Congressman/Mayor/Councilman so-and-so feel about (insert your cause here)? How are they planning to vote? Why or why not? Follow up their comments with your views.

4. Be honest. If you don’t know– say you don’t know and promise to find out– then get back to your public official.  This is actually a good thing because it gives you an excuse to call or write back.

5. Tell your story— it shouldn’t be a play-by-play– keep to the outline version.  Politicians needs examples of real people who benefit from the law being passed– or repealed. They are people like us– parents, business people, community members, vets, customers…

6. Know who you’re talking to. What is their history? Do they have kids? How have they voted on similar issues? Use the similarities between you and them as a hook. If they can relate they are more likely take up your cause.

7. Offer to help. I’ve always believed that if I’m going to ask someone to do something for me, I must be willing to help them get it done– and, support them when they put themselves on the line for us.

8. Be Persistent! Any changes, progress or set-back is a good excuse to make contact again.

9. Double Dip. Do it all– call, fax, write, email, get an appointment, cast your votes on Facebook’s Visible Vote, sign polls, contact organizations associated with your cause (Organizing for America, Autism Votes, etc.)

10. Build relationships. Get to know your official and his/her staff– and, let them get to know you. Volunteer, go to public and private events, send birthday cards– be creative.

Although it varies by person/office– generally speaking, a personal visit has the most weight followed by a snail-mail hand written letter, then phone call, then email or fax. You can– and should– ask the staff member you talk to what works best for them.

To get an appointment all you have to do is ask for one. It’s really pretty easy– call the scheduler in their office and set it up.  You can meet with your elected official at their local office during a home visit– or at their government office. Typically summer time is “downtime” and therefore the best chance to chat. When you do get an appointment– Be respectful of their time— if they spent an hour with each of us they wouldn’t have time to cast votes or see their kids.

Don’t allow yourself to be intimidated. Our elected officials are people like us whose power is that which we gave them. When you think of these people like that, it’s easy to talk to them. 

I sometimes take my son along when I go on visits or attend rallys and, I do believe that he needs to grow up understanding the power of the common man’s voice. He needs to understand the value of his vote. He needs to learn to ask for what he needs. However, parents must weigh privacy against impact and education. Many private citizens have had their lives torn apart by becoming involved. Personally, we haven’t had any negative experiences as a result of our very public involvement and for that I’m thankful– but, it’s important for each person/family to consider this potential downfall.

My Congressman, John Boccieri,  is up for re-election. Our family is volunteering and donating to his re-election campaign. It’s important to us to keep this man who, despite personal threats, voted for our son to get insurance.  It’s important to us to have representation who “gets it”.  Whether we had gone to Washington to stand with him as he made his announcement of support for healthcare reform, we would be supporting our Congressman because thanks to John Boccieri, my son will have insurance on October 1, 2010.

As parents we have a powerful, passionate voice– one that knows the daily struggles, one that knows our children’s needs. Let your voice be heard!

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.