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Posts Tagged ‘Shelley Hendrix’

Hurricane Irene: How to Prepare

August 26, 2011 5 comments

Hurricane Irene is bearing down on the U.S. East Coast with exteme impacts expected through the weekend. Hurricane warnings and watches are posted as far north as New England. Autism Speaks wants to make sure that everyone can be as prepared as possible.

Here are some useful links that will help in storm preparation.

Here Shelley Hendrix shares how to navigate the uncertainties of a natural disaster as the mother of a child on the autism spectrum. She offers some special things to do for families having to evacuate.

The Autism Safety Project provides information for families and First Responders with information and guidelines for communicating with individuals with Autism Spectrum Disorder (ASD) in emergency situations.

AutismCares Provides Grants for Individuals with Autism Spectrum Disorders During Times of Crisis or Unplanned Hardships

Please everyone be safe and follow all precautions.

Please know that you can always contact the Autism Response Team (ART) members are specially trained to connect families with information, resources and opportunities. Call us at 888-AUTISM 2 (288-4762) or email us at familyservices@autismspeaks.org.

Autism Votes 100,000 Advocates Strong

July 21, 2011 12 comments

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

It was four summers ago that Autism Speaks recruited me to help build a network of autism advocates across the United States, an assignment that recalled my earlier days growing up in the South where summertime activities always included gardening. My parents planted their garden in the spring while my grandmother had a large garden year round at her home in Alabama.

Productive gardening takes diligence – Preparing the ground by tilling and fertilizing the soil. Plowing rows. Placing stakes and strings to support tomatoes and string beans. Planting the seeds or seedlings. And putting up scarecrows. The garden must be watered daily, soil nutrition levels maintained and yes, weeds must be pulled.

As kids, my brothers and I would grow so impatient after planting the seeds. Why did it take so long to notice any change? We would run out every morning to see if anything had popped through the soil or if a flower had formed. Did we see any sign of a fruit or vegetable on the plant? No,just dirt.

But magic was happening below the soil’s surface.

Our mother and grandmother would hand us a bag and instruct us to start pulling the weeds before they got out of hand. Sometimes it was difficult to tell the difference between a weed and a seedling. Sometimes we made mistakes. We rolled up our sleeves for this boring, hot chore, but learned that in order to have a vibrant garden, patience was a prerequisite.

Wait. Wait. Wait.    Weed. Weed. Weed.

Somewhere around mid-summer the plants would take off!  Delicious vegetables would start coming in – different plants at different times – but just as our mom and grandmother advised us year after year, our patience and care paid off. Our garden was practically bursting!

As the Director of Grassroots Development for Autism Speaks, I have worked with colleagues and volunteers to carefully prepare, till and fertilize the soil for autism advocacy, to plant seeds of change in communities nationwide, to nourish budding plants of reform and from time to time, roll up my sleeves and pull out weeds. All the while, teaching each new gardener, one at a time, how to get to work on tedious, boring tasks while keeping focused on the dream of a beautiful harvest.

This summer, our effort blossomed – we are now 100,000 gardeners strong.  100,000 advocates affiliated with the autism community planted in every state, in communities large and small. These gardeners are dedicated – determined to make a difference for all people with autism, children and adults alike, on a myriad of issues from health insurance coverage, to securing federal research funding, to educational reform and services.

Over the last three years, our community has harvested a total of 25 states that have enacted autism insurance reform and the gardeners there continue to work hard to maintain their patch through implementation. We have planted seeds and are nurturing seedlings in the remaining states to end autism insurance discrimination. We have secured an additional $125M in research funding through the American Recovery and Restoration Act. And we inserted four very important words – “including behavioral health treatment” – into the Patient Protection and Affordability Care Act to cover applied behavior analysis therapy in the essential benefits package for those eligible for health insurance coverage under this law. We are hard at work to maintain the plants that fund autism research and treatment networks by fighting for the Combating Autism Reauthorization Act.

Sometimes, the plants of our garden are on different rows. These different plants produce different fruit and each plant requires different soil conditions and care. But the fruit of each plant is essential to a balanced diet of change within the autism community. We cannot let any of them wither on the vine.

In the end, I learned life lessons from my mother and grandmother’s teachings.  I may have one big black thumb when it comes to raising a real garden of my own, but I love to plant, grow and nurture people and will help you become a strong, healthy advocate for change.

If you want to learn how to roll up your sleeves and make a difference in a community garden, please join our Autism Votes program at www.autismvotes.org. We provide you with easy steps to participate so you can obtain health insurance coverage, federal funding for autism research,  secure tax deferred savings plans for your child’s adult needs,  services for people with autism and education system improvements. If you are interested in becoming a gardener or district leader in your area, please email us at advocacy@autismspeaks.org .

The Journey to Insurance Reform: Next Stop Albany

May 25, 2011 4 comments

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

On a gray, drizzly Tuesday, I rode an Amtrak train from New York City up to Albany to meet with parents and legislators who want to bring autism insurance reform to the Empire State. As the tracks skirted the Hudson River, I thought how much my son Liam, who has autism, would enjoy this trip. Staring at the view rushing by. Checking out the snack car. Asking a million questions of the conductor or people who just want to listen to their iPods.

Then I wonder why they are going to Albany.

Is what they are doing in the Capitol today just as important to them as this is to me?

It took trains, planes and automobiles to make this day happen…and luckily, so far, no boats. Back home the Mississippi River in my hometown of Baton Rouge was cresting. Families west of me flooded by opened valves in the Morganza spillway. I looked at the Hudson a little differently on this trip – watching it flow along, unobstructed, to the Atlantic Ocean – mighty and unstoppable. Rivers respond directly to their environment generally maintaining their course but occasionally overflowing their banks and destroying everything in their path.

Passage of reform in New York State  is not only incredibly important for New York families of children with autism but a key state for the rest of the country as well. By securing New York, our community sends a clear message to Congress that discrimination against people with autism must end – now. Additionally, it will provide coverage for people who live in states that have not passed reform yet provided they work for a company headquartered here.

For some kids in Utah, Ohio and Georgia, to name a few, relief might be on the way a little early.

I came to Albany to meet with parent advocates and network with other groups to create one formidable force – one mighty and unstoppable river of advocates made up of parents like those who drove up braving the inclement weather and apparently an alligator on the Long Island Expressway.

I also came partly to remind this otherwise progressive state that they have yet to do what 26 other states including Arkansas, Montana, West Virginia and my own home state of Louisiana have done.

The autism community was divided over support for last year’s bill and the river of support was directly affected by the environment. The initiative destroyed as the constituent river forked and flooded the Legislative and Governor office phone lines with calls both in extreme support and determined opposition. In the end, who wants to fund an initiative like this if the community it benefits is fighting about it. In this economy with scare resources, it’s just easier to fund initiatives with a more unified front.

This year though the river is moving along smoothly, staying within its banks. Community leaders from various organizations painstakingly compromised on language introduced one bill this year to move forward in a unified manner. But in order for this bill to become law, New York politicians will need to hear from their constituents. And our voices will have to drown out opposing forces outside the autism community.

Everyone is busy but we hear time and time again from every nook and cranny around the United States that face to face meetings with legislators are the most effective thing you can do for change. Every day the insurance industry has lobbyists who stroll the halls in Albany working against your kids in New York. If you want this bill, with the language the way it is now, you will have to stroll the halls or meet with your legislators when they are back in the district.

After riding on that train on Tuesday, I realize firsthand how hard it is to physically get to Albany. But I also learned that close to 1.5 Million people live in the Albany metro region. To those families, I am calling on you personally to do what you can to get down to the Capitol more regularly during the session. Meet with legislators and their staff. Please be our ground forces for families like yours who live 5, 6, 8 hours away on the other side of the state.

For the rest of New York, you are not off the hook! If you want this I hope over the next month you are prepared to make countless phone calls to support them. Make sure you are registered at www.autismvotes.org!

Everyone gets nervous talking to politicians but don’t worry. If you have never done this before, we will teach you what you need to say and how to do this. We just need to know who is willing to commit to working this bill in the halls of the Capitol over the next six weeks.

If you live in Albany and want to become part of our ground force operations, please email me at Advocacy@autismspeaks.org.

And We’re Off!

January 13, 2011 7 comments

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.


It’s easy to tell the first Monday back after the New Year in the Government Relations department at Autism Speaks.  It’s full of sparks as rockets start taking off in every possible angle in the race to introduce autism insurance reform legislation in the states.  States spend all fall hammering out policy details, knitting coalitions and growing their grassroots advocates and then BANG! It’s off to the races. This mad pace continues throughout the first half of the year in the scramble to see whose states will achieve the objective this spring legislative session.

Earlier this week, Oregon entered the fray as the first state of 2011 to introduce autism insurance reform legislation with both a House and Senate version of the bill.  Oregon has a legislative session that only meets during odd years.  The team of volunteers in 2009 worked very hard but we just didn’t reach this objective.  We know more now. We are armed with more data and more states have enacted legislation. Oregon’s volunteer leaders have spent time cultivating that fresh ground and sowing the seeds necessary for success.

Their time is now.

When you look at our map of the United States you see a swath of green across the nation utilized to signify the 23 states that have passed this legislation in the heartland, along the Gulf Coast and up the Eastern Seabord. But the west coast has remained unphased.  All children with autism need appropriate health care coverage.

How is it possible that our nation has an entire coast where no coverage exists for our children to access the treatment and therapy they need?

2011 is the year to resolve that injustice. And Oregon Autism Advocates, I hope you will get involved and change your children’s destinies.

Martin Luther King, Jr. once said, “Change does not roll in on the wheels of inevitability, but comes through continuous struggle.”

With Martin Luther King, Jr. day approaching on Monday, if you live in a state that has not yet turned green, listen to his words and let that motivate you. Do not give up.  Do not sit quietly and depend on others to do this hard work for you. Roll up your sleeves, get busy and get it done. It is worth the struggle.

Yesterday, I spoke with a parent from a state whose law was recently implemented.  Their child is severely affected by autism – and is a teenager.  Their family had lost hope.  With the advent of the child’s new ABA therapy program, because they have access to this treatment, he is now learning independent skills. He is making small meals for himself. He is doing his laundry. He can perform chores around the house.  He is contributing to the family unit and because he is more engaged it has changed the dynamic of the family’s life and his.

These laws are changing lives.

They can change yours.

If you live in one of the 27 states that have not passed autism insurance reform and want to get involved to change that visit www.autismvotes.org and sign up today.

Good luck Oregon. We are rooting for you!

KEY: Green - Enacted law Red - Autism Speaks endorsed bill in 2011 Yellow - Working on bill in 2011 Blue - State not currently pursuing legislation in 2011

Tough Cookie

August 31, 2010 Leave a comment

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.

Passing autism insurance reform legislation has been one tough cookie indeed!

In 2007, when Autism Speaks launched the Autism Votes program and Government Relations Department, three states had meaningful insurance coverage for children with autism.  Today, three years later, our community has enacted legislation in 20 more states in an unprecedented wave of reform across the United States. It has been three tough years and we still have a long way to go to achieve reform for meaningful health insurance coverage for every person with autism in our country, but we are well on our way!

In both our Federal and State-based legislative initiatives, Autism Speaks uses a specific formula – our “cookie recipe.” My last couple of blogs has focused on each of the ingredients in our recipe – why we need them, what purpose they serve and how they should be blended together.  Flour represents our grassroots effort.  Eggs represent unity and focus of our community.  Butter which represents professional lobbyist assistance. A pinch of salt represents the bill’s legislative champion and sugar represents the policy.  Each state’s “cookie,” their autism insurance reform initiative, is shaped, flavored and decorated differently once we bake them but by following the cookie dough recipe we have a tasty treat in the end for people to enjoy.

We made our dough and it is chilling in the refrigerator while we get out the cookie cutters, the rolling pin and the sprinkles to decorate the cookies. Passing a good bill, that achieves our number one goal of the highest coverage for the most children, is our aim.  Politics is the ultimate art of negotiation – start high and work down through all interested parties – the parents, the children, the community as a whole, the legislators and the executive branch – to roll out a bill that the parties can agree to and – here is the key word – enforce.

Cookie dough is just cookie dough until you bake it. Similarly, a bill is just a bill – words on paper that might read well but have no true impact – until it becomes a law and actually affects change.

Before we roll out that dough, we preheat our ovens and begin to make visits in the off season to legislators.  We start a buzz that heats up our issue long before we put the dough in the oven.  We sprinkle out a little more flour on our countertops and start rolling our dough to shape it for each state.  We lay the cut out cookies on the sheet and sprinkle them with the final touches. We always make sure to put on our oven mitts so we don’t burn our hands.

As the cookies begin to bake, they start to smell great.  We can almost taste them.  But we can’t take them out too early or we will just have hot dough!  We can’t leave them in too long or they will burn up, be inedible and we will have to start over.  We have to put them in and check on them throughout the process to make sure we have baked the best cookie that we can bake.

Do you live in a state that doesn’t have “cookies” yet?  Are you drooling to have some?  We could always use more flour!  Get involved.  We make things easy for you to get scooped up at Autism Votes.  We send you easy action alerts to follow so you know just what to do, how to act and when to act.  We even provide scripts to help you make your phone calls and send e-mails.

We need more help at every level so if you have ever had someone say to you, “I wish we could help you and your family!” here is a low-cost, high yield way that they can do just that.  Ask your family members, co-workers, therapists, teachers, neighbors and friends to sign up at www.autismvotes.org this week.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org.

How Sweet It Is!

August 24, 2010 1 comment

This post is written by Shelley Hendrix, Autism Speaks’  Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin.  Liam was diagnosed with autism age the age of two in 1998.  She began advocating on behalf of her son and other children with autism almost from day one.

In both our Federal and State-based legislative initiatives, Autism Speaks uses a specific formula – our “cookie recipe.” My last two blogs focused on flour, representing our grassroots effort, and eggs, which represent unity and focus.  With our cookie mix fully underway now, we need to add in three new ingredients – butter, which represents professional lobbyist assistance, a pinch of salt, which represents the bill’s legislative champion and sugar, which represents the policy.  Each state’s “cookie,” its autism insurance reform initiative, is shaped, flavored and decorated differently once we bake them but when the recipe is followed to a tee we have a tasty treat in the end for people to enjoy.

Most sugar cookie recipes call for both one stick of butter, a pinch of salt and a cup of sugar.  In order to get all the ingredients to mix most effectively, you have to blend all three of these before you mix them in with flour and eggs. Our goal at Autism Speaks is to secure the greatest benefit for as many children for as long as possible.  Depending a state’s existing insurance code and their particular political-economical condition, our model legislation is retrofitted through a development process that requires legislators and the community work together to produce bill language that is most likely to pass.  Although it sounds counterintuitive at first, developing a perfect bill is not necessarily our aim. Passing a good bill, that achieves our number one goal of the highest coverage for the most children, is what we are after.  Politics is the ultimate art of negotiation – start high and work down through all interested parties – the parents, the children, the community as a whole, the legislators and the executive branch – to roll out a bill that the parties can agree to and – here is the key word – enforce.

A bill is just a bill – words on paper that might read well but have no true impact.  A law is what actually affects change.

So we take our sweet piece of policy, the sugar, and often blend that together with butter, our lobbyists or other professional advisors, before we even begin adding the other ingredients to the mix. Once that is all whipped up together we throw in our pinch of salt – which is a champion.  We have had champions in this state-by-state campaign who have been, most definitely, worth their salt. These champions fight like pit bulls in committees and on the legislative floor for your child almost like their own.  To be most effective, these ingredients are mixed in a separate bowl, and then folded in with the flour, our grassroots, and eggs, our unity and focus, to produce the raw cookie dough.

Cookie dough made without sugar is just a biscuit.  Cookie dough made without butter doesn’t have the smooth texture needed to roll it out and shape it properly.  And salt?  It’s just a pinch…but that pinch is important.  Salt is used in baking for its chemical properties.  Salt slows down all the chemical reactions during baking making the dough stronger and tighter. Salt impacts the shelf life of the final product and it potentiates the flavor of all the other ingredients, especially the flour.  It might be the tiniest portion with regard to the scale of other ingredients but incredibly essential.

With all of these ingredients assembled and blended our dough is almost ready. But just like a bill is a bill – NOT a law. Similarly, dough is just dough – NOT a cookie. Next week, we will learn how to roll out that dough, have our cookies take shape and finish our recipe!

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org

The Incredible Edible Egg

August 17, 2010 5 comments

This post is written by Shelley Hendrix, Autism Speaks’  Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin.  Liam was diagnosed with autism age the age of two in 1998.  She began advocating on behalf of her son and other children with autism almost from day one.

Autism Speaks’ approach to advocacy in both our Federal and State-based legislative initiatives uses a specific formula – our “cookie recipe.” My last blog focused on flour, representing our grassroots effort, as one of the most fundamental ingredients for any cookie recipe.  While flour creates a foundation for the cookie, other essential ingredients are required to make the final tasty treat.  Each state’s “cookie,” its autism insurance reform initiative, is shaped, flavored and decorated differently but when we follow this tried and true recipe, we celebrate with a big, batch of cookies.

In our recipe, eggs represent the unity and focus in our community.  Just one egg has 13 essential nutrients and while the cost of other foods skyrocket in today’s economy, the simple egg remains one of nature’s best bargains with regard to high-quality protein foods. Eggs consist of two basic parts held together by a fragile shell. Outward appearances indicate that the fragile egg is contained and unified.  Once you crack that shell, you can see those separate distinct parts – each part of the egg serving a different, but important, purpose for the egg as a whole.

When baking, we know that to move forward and make a great cookie, the egg must be whisked to unify its distinct parts so that it can do what it was meant to do for the cookie overall – serve as a bonding ingredient – unifying the flour, sugar, butter and pinch of salt.

The “egg” in our recipe represents the autism community’s unity and focus on the legislative initiatives we work on to improve our children’s lives. Before we take a crack at these initiatives, we are held together with our fragile shell that unifies us – our children who have autism.  As we move through the process of working on these projects, we crack that egg to find different parts inside – parts of our community that all serve essential purposes.  Parts which, when working separately, would not have the same effect as when they are whisked together in unison and focused.

Every time our family bakes anything, Liam and Mairin argue over who gets to crack and whisk the eggs.  To them it is more fun than measuring out the other ingredients.  It is for me, too.  Over the last three years, I have enjoyed nothing more than working with a variety of different people in the autism community who hail from different philosophies on how their children developed autism, how autism should be treated not to mention the different socio-economic statuses, educational levels and backgrounds.  I love working to whisk them all together and make that “cookie’s” ingredients blend successfully.  I have witnessed firsthand what a unified community can accomplish when they refuse to be divided.

Unity for the autism community is a fragile egg indeed.  But it is a low-cost, big -bargain, high-protein source that should fuel us, bond us and make us better, and more incredible, than we would ever be without it.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org


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Flour Power

August 4, 2010 3 comments

This post is written by Shelley Hendrix, Autism Speaks’  Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin.  Liam was diagnosed with autism age the age of two in 1998.  She began advocating on behalf of her son and other children with autism almost from day one.

When you build anything from skyscrapers to cookies, everyone knows that you have to begin with a solid, strong foundation. Autism Speaks’ approach to advocacy in both our Federal and State-based initiatives use a specific formula, what we call our “cookie recipe” as our foundation for success. We firmly recognize that each state’s “cookie,” its autism insurance reform initiative, will be shaped, flavored and decorated differently. But when the community follows this tried and true recipe, they have a big, batch of cookies at the end for their celebratory party.

One of the most fundamental ingredients in any cookie recipe is flour. Without flour, a sugar cookie recipe is basically just butter, eggs and sugar – it’s the flour that makes it all come together and taste good. All-purpose flour is comprised of both hard and soft wheats to produce a substance with fine texture and high starch. As a result, the baker doesn’t have to stretch it or make it rise much to produce a perfect cookie. Same with our grassroots advocates. They bind all of the efforts of the policy, the lobbyists and the political leaders. They provide the foundation of the movement that affects change in our children’s lives and come from a variety of backgrounds, blended together for one purpose.

Grassroots are a vital ingredient in comparison with all the other ingredients required to make our “cookies.” They are the flour in this recipe. Typically only 10% of the American population participates in any political activism.  That means that 90% of us won’t get involved directly with issues that can impact and change our lives.

The autism community has a long laundry list of issues to work on. Can we afford to keep asking 10% of the community to help make our children’s lives better?

In the 25 states which passed legislation, the grassroots have doubled their efforts. They haunt the halls of their state legislature. They dial the phones until their fingers are worn out and their voices are weary. They invite legislators to their homes for BBQs and dessert parties to meet their children. They search for creative ways to develop and maintain a presence at the Capitol so everyone knows who they are the minute they see them coming.

In the end, they build relationships with those who represent them. In a world of instant communication and online social media, that personal connection with representatives is key to passing effective legislation. Our community needs way more than the national average of 10% for participation to improve our efficacy. We should be aiming for double that, two cups of flour power, 20%.

What a difference that would make in moving all of our issues along more quickly!

Flour doesn’t make a cookie alone just like grassroots blowing in the wind without sound policy, direction and focus won’t affect change.  Every state needs to double its efforts this fall to prepare for our bake off next spring legislative season … because without that flour power … you just have sweet, scrambled eggs.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org


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Grandma’s Recipe for Advocacy Success

July 23, 2010 3 comments

Autism Speaks' staffer, Jennifer Smith, with a puzzle piece cookie

Every Christmas season when I was little, my grandmother would make a huge batch of cookies and mail off a box to each of the grandkids.  We would rip open the containers and look at all the pretty little cookies that were layered through it. She used the same basic dough to make each cookie, but they were all decorated differently and came in a variety of shapes, sizes, flavors and colors.

When I am talking to Autism Speaks volunteers throughout the country who are working tirelessly on autism insurance reform legislation, I often think about my grandmother’s cookies when I refer to our grassroots advocacy approach as our sugar cookie recipe.  This is because, whether we are advocating for autism insurance reform legislation in the Kentucky State Senate, the New York State Assembly, or the United States House of Representatives, the “recipe” to move from an idea, to a bill, to an enacted law remains the same.

Like my grandmother’s cookies, the Autism Speaks Government Relations Team, in partnership with our Chapter Advocacy Chairs (CACs), families, and a network of other “on the ground” individuals and advocacy organizations begins with a basic recipe for success that we then decorate differently and bake into a variety of shapes, sizes, flavors, and colors.  Like the cookies, no two autism insurance reform bills look exactly alike.  The basic recipe is the same, but certain ingredients are tweaked, added, or removed according to the specific circumstances in the state.

Grandma’s Cookie Recipe for Advocacy Success:

Ingredients -

  • 2 cups of all-purpose flour – This is our grassroots.  We need twice as many as you would need to give it all of their purpose to make these bills become laws.
  • 1 stick of butter – This is our internal direction or lobbyists.  We need the real thing, not an oily substitute, to help us grease the skids.
  • 1 cup of sugar – This is our policy.  It sweetens our cookies and keeps us coming back for more as that policy reforms the lives of children with autism across the United States.
  • a pinch of salt – This is our champion or the political leadership of a state, those who are worth their salt and have the fortitude to stand up for our children.
  • 2 eggs – This is our unity and focus with the autism community.  It is a binding ingredient that pulls all of the other ingredients together into delicious dough.

Directions – Stay tuned!

For nearly three years, Autism Speaks has focused its state legislative agenda on autism insurance reform.  To date twenty-three states have passed legislation that will bring insurance reform to thousands of families coping with the financial struggles of autism.  Over the past few months, we have published several blog posts written by our CACs and chronicling the journey in their state from idea, to bill, to enacted law.  Our CACs, with their strong leadership skills, their ability to build bridges with others in their communities, their political savvy and policy knowhow are a key ingredient in our cookie recipe for success.  They are our flour.  Over the next few weeks, we would like to show you some great examples of the other ingredients in our recipe for advocacy success and directions for how these ingredients combine to successfully enact a state autism insurance reform law.  A grassroots baking lesson of sorts.

At Autism Speaks, our goal is straightforward.  We want to achieve as many benefits for insurance coverage for as many individuals with autism as possible for as long as possible while working within the parameters of existing law and the political environment of each individual state.  There are still 27 states that have yet to enact autism insurance reform legislation.  Additionally, reform is necessary at the federal level to ensure that all individuals with autism across the country, from infant to adult, have appropriate health insurance coverage for medically necessary, evidence-based autism treatments, therapies, and care.  What ingredients are still missing?  How do we add them into the batter so that everyone can eat?

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit www.autismvotes.org


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