Act Early Summit Held at Einstein Provides Regional Focus on Autism Interventions

May 7, 2009

Dr. Ansley Bacon, Dr. Annie Alonso Amador, Dr. George Jesien, Dr. Deborah Spitalnick, Dr. Yegin Habtes, Dr. Robert Marion, Dr. Karen Edwards, and Dr. Stephen Sulkes
Dr. Ansley Bacon, Dr. Annie Alonso Amador, Dr. George Jesien, Dr. Deborah Spitalnick, Dr. Yegin Habtes, Dr. Robert Marion, Dr. Karen Edwards, and Dr. Stephen Sulkes

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On Thursday, March 26 and Friday, March 27, 2009, Albert Einstein College of Medicine  served as host for the Act Early Summit sponsored by the Association of University Centers on Disabilities (AUCD), in collaboration with the Centers for Disease Control and Prevention's National Center on Birth Defects and Developmental Disabilities (CDC) and the Health Resources and Service Administration's Maternal and Child Health Bureau (HRSA). The summit, held in the Michael F. Price Center for Genetic and Translational Medicine/Harold and Muriel Block Research Pavilion and in Lubin Dining Hall, was one of several regional meetings that the AUCD, CDC, and HRSA are holding across the nation to develop plans of action for effective and efficient early interventions concerning the diagnosis and treatment of autism.

For the first time, stakeholders from each of the states and territories in Legislative Region II -- which is comprised of New York, New Jersey, Puerto Rico, and the Virgin Islands -- were able to come together in one location to share their ideas, thoughts, and insights about how to implement the CDC's Learn The Signs/ ACT Early initiative, an attempt to train providers, families, and community members how to identify autism and related developmental disabilities in very young children. During the two-day summit, the participants -- numbering nearly 80 -- included clinicians, researchers, policy makers, educators, and parents.

In his welcoming remarks, Robert Marion, MD, director of the Children's Evaluation and Rehabilitation Center at Einstein and professor of pediatrics, said, "This is the start of a long-term activity, like raising a child. We'll be able to meet people from agencies with which each of us have worked in our attempts to provide the best services possible for children with autism. But meeting will be the first step in what we hope will be a long and fruitful relationship." He then introduced Allen M. Spiegel, MD, The Marilyn and Stanley M. Katz Dean at Einstein, who noted, "We are delighted to host you here in the Bronx... This kind of meeting is a collaborative effort to work together on an important goal concerning a major healthcare challenge that represents a devastating, serious problem. We're very supportive of your efforts to come together to do what's necessary."

On the first day of the summit attendees listened to keynote speaker Paul Carbone, M.D. discuss his experiences as a pediatrician in Utah and as the father of a young child with autism. Dr. Carbone noted, "We still know very little about autism, but we know we need to continue the dialogue. There's a lot we can do to help families move forward."

He then discussed how the majority of parents who have children with autism are dissatisfied with their care providers and their inability to provide suitable services. "Too often they lack expertise in autism management, do not pay attention to the family and the effects on them, are not supportive of complementary or alternative care, and do not listen to concerns about the child's development," said Dr. Carbone. "We need to design systems that support families, and that build their resilience and improve outcomes."

The attendees also heard from leading clinicians and researchers from the host organizations. This included George Jesien, PhD, director of AUCD, who reminded everyone, "While our focus is autism, if we address the demands, we can improve services for all children and families, not just those with autism." Dr. Jesien's comments were reinforced by Alison Johnson, of the CDC, and Ellen Volpe, of HRSA, who each offered perspectives on the great connections afforded by the summit's collaborative focus and about the support that each of their organizations provides to caregivers and researchers. "This summit offers us an opportunity to come up with a template for kids with autism and all children, and we're excited to partner with you," said Ms. Volpe.

The summit participants then broke into smaller meeting groups to discuss issues including early intervention and early childhood (birth to age five); education (K to 12); policy and advocacy; medical and health care providers; state developmental disability and health agencies; and training and research.

Dean Allen M. Spiegel shaking hands with Dr. George Jesien, exectuive director of the Association of University Centers on Disabilities.
Dean Allen M. Spiegel shaking hands with Dr. George
Jesien, exectuive director of the Association of University
Centers on Disabilities.
To begin day two of the summit, attendees heard from Marshalyn Yeargin-Allsop, M.D., MPH and Georgina Peacock, M.D., MPH, who offered an overview of the CDC Autism Initiatives and of the Learn the Signs: Act Early Campaign. Then, Robyn Schulhof provided an overview of the Combating Autism Act Initiative, discussing funding opportunities and encouraging attendees to apply. She was followed by Sam Marsh, who discussed the AUCD Federal Legislative Update.

Dr. Yeargin-Allsop, who trained at CERC, offered statistics concerning the prevalence of autism spectrum disorders (ASD), noting that approximately 560,000 children in the United States, between the ages of infant and 21, have an ASD. She discussed a study that is underway, called SEED, or Study to Explore Early Development, designed to identify children four years of age or younger, to better determine prevalence of ASD.

Dr. Peacock noted, "We need to raise awareness of developmental milestones, early warning signs, and empower parents in addressing their concerns. We need to restore hope in these families and the sense that we can do something for them."

As part of the summit, members from each of the four locales (NY, NJ, PR and VI) also met separately each day to review their respective state plan development. In addition, each day there were presentations from the National Autism Initiatives Panel addressing programs, initiatives, and resources. The first day of the summit concluded with state teams making "state of the state" presentations, followed by a networking reception, while the second day of the summit concluded with a working lunch at which participants offered "state outcomes" presentations and shared their reflections about the summit.

"All in all, the summit was a tremendous success," said Dr. Marion. "We were able to bring all the critical players involved in addressing how we care for children with autism to one location, and each state came away with a plan that they can begin to implement. So far as New York State is concerned, we learned that we are positioned nicely for leadership with the Governor and legislature interested in collaboration and autism, and that there is strong expertise on autism within and across the state that is readily accessible to meet the challenges and do the work that we've planned. We also have strong family advocacy networking within the state, with access to national and local advocacy organizations. It's now a matter of us following the action plan we've established."