Posts Tagged ‘advocacy’

Capital One Financial Corporation held its 2011 Autism Awareness Education Session

On Monday, April 25, 2011 Capital One Financial Corporation held its 2011 Autism Awareness Education Session for its associates at its Richmond facility and broadcast to its offices nationwide.  Don Busick and Nick Sladic, two Capital One associates who founded the associate affinity group called the Autism Spectrum Connection, kicked off the presentation by explaining how they formed the group at Capital One as a part of its corporate diversity program.  A handful of Autism spectrum disorder parents got together informally at first, Don explained, and proved to be the best resource for each other.  In partnership with the company’s HR team, they founded the group with three goals in mind:  to create deeper connection for the families through membership; to provide as much useful and helpful information as possible; and, in the spirit of Capital One, to give back to the communities where they are doing business.

Judith Ursitti, Autism Speaks’ Regional Director for State Advocacy Relations, spoke on the autism insurance reform movement.  She was joined on the panel by Virginia State Senator Janet Howell and Delegate Tag Greason, who were patrons of the Virginia autism insurance reform bill, which will become law at midnight on May 6, 2011.  Robbie Maino, a college-bound high school senior who is the child of a Capital One associate, spoke movingly about how early intervention made a world of difference in his overcoming the difficulties he faced in his own struggles of autism.

In addition to providing information and support to its associates, Capital One has taken the step of electing to provide coverage for autism related behavioral therapies through their insurance carrier.

Rob “RJ” Paczkowski, Capital One’s Director of Health and Wellness, gave an overview of their autism health insurance benefit.  Beginning January 2010 Capital One provided health insurance coverage for behavioral therapy for autism and other related disorders, with no dollar or age caps, as long as the treatment was pre-certified and provided under the supervision of a board-certified behavior analyst.

In addition to insurance coverage, Capital One associates can take advantage of flexible spending accounts to pay for alternative treatments or over-the-counter medications and supplements as long as they present a doctor’s letter of medical necessity. Capital One also worked with their Employee Assistance Plan to help organize special services  and resources for special needs children and to connect its associates with government benefits available to disabled dependents which are based on the individual’s needs, not the parents’ income.  Stephen Evanko and several other Capital One associates closed the session by sharing how the autism health insurance benefit made a difference in their children’s lives.

Delegate Tag Greason, Senator Janet Howel, Judith Ursitti, and Robbie Maino

Hope and Autism Advocacy

June 22, 2010 1 comment

This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.

I know that you have heard the word HOPE, but have you ever felt the word HOPE? I have and I do.

I feel hope every year at the Greater Hartford Walk Now for Autism Speaks.

I feel hope when my son tells me he is “proud he has autism.” I feel hope when his brothers say they had fun at the Walk for the first time.

At this year’s Walk, hope warmed me every time I personally met a mother I’ve spoken to after her child was diagnosed and she said, “Thank you.” Hope fed my tired spirit when my son’s friend and his entire family joined our Walk team. Hope inspired me, as 8,500 people lined up to walk for their sons, daughters, grandchildren, nieces, nephews, friends, and neighbors. Hope brought me to my knees  as I watched families simply “be” with autism, not afraid of judgment or criticism. And hope brought me to tears as I gathered our legislative champions who I have worked so hard to get to join in the fight for our loved ones.

In 2009, Connecticut became the 13th state in the nation to require private insurers to cover the diagnosis and treatment of autism. Enactment of this bill finally ended autism insurance discrimination in Connecticut, but more importantly it brought hope to thousands of families.

Autism is now a buzz word in our state capitol of Hartford. Legislators are taking note of its impact on their constituents. We have champions who know our struggles, even know our kids’ names.

There is so much more to do to help the nation’s families affected by autism, so much more to do in Congress and in our state capitols. With hope in our hearts, we can and will prevail.

Hope is why I walk and it’s also why I advocate. Hope will be why I walk and advocate, until there is nothing to left to walk and advocate for.

Christopher Reeve said, “Once you choose hope, anything’s possible.”

I choose hope.

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

“Rest assured, you have the attention of the President and the White House”

“Rest assured, you have the attention of the President and the White House”
My first meeting as a public member of the IACC

By Geri Dawson, Chief Science Officer

Last Friday was my first meeting as a public member of the Interagency Autism Coordinating Committee (IACC). It was a particularly momentous meeting for the IACC because, for the first time, Kathleen Sebelius, Secretary of the Department of Health and Human Services (DHHS), attended the meeting along with two colleagues from DHHS, Howard Koh, Assistant Secretary for Health, and Henry Claypool, Director, Office on Disability. In addition, two representatives from the White House, Michael Strautmanis, Chief of Staff to the Assistant to the President for Intergovernmental Relations and Public Engagement, and Kareem Dale, Special Assistant to the President for Disability Policy, attended the meeting. Moreover, Francis Collins, Director of the National Institutes of Health, addressed the IACC. It was an auspicious beginning to my experience on this committee, to be sure.

The Secretary began by welcoming five new members to the IACC, which included Gerald Fischbach from the Simons Foundation, Marjorie Solomon from the MIND Institute at UC Davis, Ari Ne’Eman from the Autism Self-Advocacy Network, Denise Resnik from the Southwest Autism Research and Resource Center, and me, representing Autism Speaks. Secretary Sebelius began by telling the committee members that we “need to leverage all of our assets” and “work together across all agencies” to address the “alarming increase in autism rates” as well the need for “top notch research and services.”  She promised that she will be taking very seriously the recommendations that come from the IACC. She told the committee, “Rest assured, you have the attention of the President and the White House.”  Kareem Dale reiterated these themes, remarking that the White House’s goal and mission are to give autism issues the “highest level of attention.” 

These encouraging remarks were followed by those of Dr. Collins, who also previously served as the Director of the NIH Genome Institute and the Human Genome Project. He began by stressing the need to understand the causes of autism and ways of preventing and treating this challenging condition. “I get the sense of urgency,” Collins remarked, a point he said was especially made clear to him during an earlier meeting he held this year with parents and members of autism advocacy groups. “Parents are never happier than their saddest child,” he remarked, “and if we can help with our resources, that’s what we want to do.”  He noted that the IACC is distinguished among other government committees by its membership and activism, a fact that reflects the passion and urgency of the autism community. Dr. Collins shared his enthusiasm for the important role of genetics in the discovery of causes and treatments for autism, noting in particular, the exciting results of the Novartis clinical trial that was featured on the front page of last Friday’s New York Times. He stated that he didn’t think that the whole story is DNA, however, and that environmental factors and their interaction with genetic factors play key roles in understanding the causes of autism. In this regard, he described the National Children’s Study, a huge NIH effort to follow 100,000 children from conception through adulthood to discover how environmental exposures are influencing children’s health outcomes. He explained that autism is one of the stronger reasons for investing in this expensive effort. He also noted that research on behavioral interventions for ASD continue to be important. The necessity to avoid conservatism in the types of grants NIH funds, especially during hard economic times, was highlighted. Collins encouraged “out of the box” ideas that can open new perspectives and directions for autism research. He ended by again expressing his awareness of the great suffering that is experienced by many people with autism spectrum disorders and their families, ending with a quote from Winston Churchill – “If you are going through hell, keep going.”  “Let’s all keep going,” he urged the IACC members, “because on the other side, there will be more understanding and more hope.” 

I had the pleasure of giving the first talk after Dr. Collins. I reported on the activities and achievements of Autism Speaks’ Autism Treatment Network (ATN). I described the goals of the ATN, which include improving access and quality of medical care for children with ASD, developing evidence-based treatment guidelines, providing clinician training in the medical treatment of ASD, and conducting research on medical treatments. I described the network of 14 academic centers that comprise the ATN, which provides care for over 5,000 children (with over 2,000 now part of the ATN patient registry). Based on data collected through the registry, I described the common kinds of medical issues that many children with ASD face, including GI problems, sleep disturbances, neurological conditions, among others. I also described the vision for the ATN, which is to increase the number of centers nationwide, improve quality of care through training and guideline development, and provide empirical support for novel and effective treatments for ASD. After my presentation, several people remarked that they were not previously aware of the extent to which medical conditions affect the quality of life for individuals with ASD. To read more about the other presentations at last Friday’s IACC meeting, click here.

It is an honor to serve people with autism and their families on the IACC. I will do my best to represent all those who are suffering because of autism. My first charge will be to do everything I can to persuade our government to keep the promises made at Friday’s meeting of the IACC.

The Everyday Advocate

April 2, 2010 6 comments

Areva Martin with her book, The Everyday Advocate

Mom, lawyer and advocate Areva Martin was at the United Nations and at Border’s bookstore on April 1 discussing her new book The Everyday Advocate: Standing Up for Your Child with Autism. The book provides practical strategies, solutions and resources. As the mother of a child with autism, Ms. Martin hopes to empower other parents and caregivers to stand up for themselves and their loved ones.

Ms. Martin led an animated discussion of her book and signed copies of her new book at Borders in New York City. There were many questions from the group about advocacy, causes of autism, treatments and more. The book can be purchased through Borders, Barnes & Noble or

In Their Own Words – Siblings Speak … It’s Time to Listen

March 18, 2010 3 comments

Eight Young Women Can Change the World

This guest 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.

One night in the spring of 1988, I sat cross-legged on the floor of a chapel. I was in my first year at Mount Holyoke and my roommate had asked me to ride the bus with her over the mountain to Amherst College. The guest speaker that evening was Coretta Scott King – an opportunity of a lifetime. How could I turn that down?

 So there I sat, listening to her melodious voice, hanging on every word until I walked out of that chapel changed and determined to change something. I wanted to be like her, inspiring people into action, but for what purpose? 

Twenty-two years later, I work on civil rights issues for children with autism daily through Autism Votes – an Autism Speaks initiative. State by state, the dominoes convincing politicians that it is inappropriate to allow marketplace discriminatory practices to continue against our children are falling. They are beginning to agree with our community that it’s unacceptable for insurance companies to accept  premiums from parents while simultaneously denying coverage for the treatments and therapies their children’s physician prescribes. 

Our volunteers will tell you I often compare the tedious, slow growth of an advocacy program to eating their vegetables – necessary but not glamorous. Like a nagging mother at the dinner table, I remind them that splashy rallies, hearings, press conferences, victories are all sweet, but you won’t get dessert without eating your veggies. Not in my house. Not in political arenas either.

This spring, we initiated an internship program at Mount Holyoke for a data entry project to more quickly strengthen our advocacy base. I knew these women would be socially aware, committed to making a difference. I knew that the College doesn’t generally offer internships during the semester where they can garner skills to help them find a meaningful summer employment.

My recruitment trip last week was successful. I found eight willing young women hailing from three countries and six states. All first years, none of them know what they want to be when they graduate, nor do they know anything about autism – yet. Now, the possibility exists that they will enter any number of fields that will serve our community well or bring this newfound knowledge back to their countries to change autism communities there. 

Autism Votes strives to make your participation easy so you feel empowered. We want you to be a part of each step changing this system – making it work for your family instead of spending your time and money railing against it. Your children deserve equal access to the medical treatments they need – today.

Eight young women you may never meet now want the same thing for your children. They caught the fire and the passion on that cold, snowy February day in Western Massachusetts. They have a mission now to change the world – your world.

Autism Votes. It’s time for lawmakers listen. More importantly, it’s time for you to tell them what you think.

Get involved today at

The Autism Advocacy Community Finds Common Ground at a Meeting with Francis Collins

February 8, 2010 Leave a comment

By Geri Dawson, Chief Science Officer, Autism Speaks

This week, an unprecedented gathering of the autism advocacy community was held at the National Institutes of Health. Francis Collins, director of the nation’s largest agency focused on science and public health, met with members of diverse factions of the autism community to listen to their priorities and perspectives. As Collins noted early on in the meeting, the strife among the members of the autism community is “legendary,” sometimes scaring members of the scientific community who often will instead choose to study less controversial conditions. Not surprisingly, opinions expressed at the table were indeed diverse, ranging from those who believe that autism is caused by toxins in our environment and advocate that NIH’s efforts should be targeted on prevention to those who believe that autism shouldn’t even be considered a disorder and efforts should be directed instead at improving the quality of life of persons with autism spectrum disorder. Remarkably, however, finding common ground among the autism community became the theme of the meeting.

As different members of the community passionately spoke about the suffering of people with autism and their families and the urgency with which the NIH needs to respond to the autism public health crisis, it became clear that a large part of the divisiveness among the autism community is the result of the tremendous heterogeneity in the condition. Some who spoke were parents of children with autism who are nonverbal and suffer from debilitating medical conditions, such as GI problems and seizures, whereas others who spoke were persons with autism spectrum disorder themselves, who were able to eloquently describe the need for greater acceptance of persons on the autism spectrum. And while there remained significant differences of opinion regarding where NIH should direct its resources – whether on prevention, causes, more effective treatments, or services – the common sentiment emerged that our unified goal is to relieve the burden of autism in all of its forms and manifestations. Furthermore, there was a shared sense of urgency and recognition that the NIH needs to be more aggressive, coordinated, and directive in its pursuit of scientific discoveries that will have real impact on the lives of persons with autism spectrum disorder and their families.

The meeting ended with a few words of advice from the director of NIH. He suggested that the autism advocacy community will be more effective the more we find common ground. He noted that while there are real differences of opinion, we are all on the same team and we should remember to “respect the person while challenging the idea.” He urged the autism community to hold the NIH accountable. And finally, he talked about the importance of bringing together the basic scientists with people suffering from autism, noting that this personal connection made a difference in his own career and can be highly motivating for scientists, many of whom are trying to make a real difference in the world.

I personally left the meeting feeling more hopeful that the autism community can indeed work more respectfully and productively together by finding common ground. I believe that a unified voice will be critical for holding NIH accountable. Because of the scale of the public health crisis we face, we urgently need more scientific resources devoted to our cause. Together, we can make it happen.

Geraldine Dawson became Autism Speaks’ first chief science officer in January of 2008. In this role, Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dawson is also Research Professor of Psychiatry at the University of North Carolina at Chapel Hill.


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