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IACC Subcommittee for Planning the Annual Strategic Plan Updating Process Meeting

December 2, 2010 Leave a comment

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process Meeting will take place on Friday, December 3, 2010 from 10:00 a.m. to 4:00 p.m. EDT, at the Bethesda Marriott in Bethesda, Maryland.

In this meeting, they plan to discuss the updating of the IACC Strategic Plan for ASD Research. Visit the IACC website for more details.

IACC workshop addresses strategies for streamlining services and supports

November 11, 2010 1 comment

This guest post is by Carrie Masur Gillispie. She is a Government Relations intern at Autism Speaks with a Master of Education in school psychology.

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee held a workshop on November 8th called “Building a Seamless System of Quality Services & Supports Across the Lifespan,” in Rockville, Maryland (view the agenda here). The all-day event focused on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. The workshop was open to the public, and several community members attended the event including parents, educators, medical professionals, and researchers.

Nancy Thaler of the National Association of State Directors of Developmental Disabilities Services, Bill East of the National Association of State Directors of Special Education, and K. Charlie Lakin of the University of Minnesota painted a picture of the current state of autism services. They noted that while services have come a long way over the past few years, families still need help with accessing service providers and support agencies who can meet their unique needs. They also noted concerns about the increasing demand for autism services due to increased prevalence and the fiscal challenges many states are facing in funding these services.

Self-direction care programs give people with autism more power over deciding how to use public funds to fit their individual needs. Several states have secured federal waivers that give individuals with autism a budget, and the authority to choose how to spend that money among a selection of services and supports. They can tailor a combination of providers to best support their needs. These programs are sometimes referred to as “Cash and Counsel.” Michael Head of the Michigan Department of Community Health and James Conroy of the Center for Outcome Analysis discussed how to implement and evaluate these programs.

There are many different types of services and supports out there, and there is no one-size-fits-all combination to suit the unique needs of each person with autism. Donald Clintsman from the Washington State Department of Social and Health Services emphasized that it is important to cater those services according to each person’s needs. He presented a standardized way to assess each person’s needs in order to deliver the most appropriate services possible.

The training of professionals who work with people with autism was a key topic for three speakers. Kevin Ann Huckshorn from Delaware Health and Social Services presented training strategies to prevent and reduce the use of seclusion and restraint. Her model emphasized preventing conflict escalation and encouraging positive support. Carrie Blakeway of The Lewin Group and Erika Robbins from the Office of Ohio Health Plans highlighted issues surrounding hiring, educating, and supporting those who work with people with autism.

Sheldon Wheeler from the Maine Department of Health and Human Services presented examples of innovative strategies to give adults with autism better housing options such as individualized housing, homeownership, positive social environments, and housing modifications. Lisa Crabtree of Towson University and Julie LaBerge of the Bonduel School District in Wisconsin described peer support programs creating positive relationships and raising autism awareness in their schools. Jim Sinclair, co-founder and coordinator of the Autism Network International, described the advantages of people with autism providing peer support for others with autism.

Highlighting the need for streamlining the many service agencies within each state, John Martin from the Ohio Department of Developmental Disabilities discussed strategies for integrating government systems that provide autism-related services.

The subcommittee, as well as members of the IACC, had the opportunity to ask speakers questions about the most effective ways to build a more efficient system of services and supports. It was an information-packed day that fostered interesting discussions and several recommendations for achieving this important goal. Links to the speakers’ presentations are expected to be posted on the IACC website next week.

IACC Services Workshop: Building a Seamless System of Quality Services & Supports Across the Lifespan

November 5, 2010 1 comment

The Interagency Autism Coordinating Committee (IACC) will hold an IACC services workshop, “Building a Seamless System of Quality Services & Supports Across the Lifespan” on Monday, November 8 in Rockville, Md. The meeting is free and open to public and will also be available as a live videocast.

The workshop will focus on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. Visit the IACC website for more details.

“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.

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