Washington - On a day designated by the United Nations to highlight the growing global health crisis of autism, Assistant Senate Majority Leader Dick Durbin (D-IL) and U.S. Senators Bob Casey (D-PA) and Robert Menendez (D- NJ) today introduced legislation that would create a comprehensive strategy to address the needs of families affected by autism spectrum disorder. The Autism Treatment Acceleration Act requires health insurers to provide coverage for the diagnosis and treatment of autism and authorizes federal funding for a wide range of service, treatment, support and research initiatives.
"Almost 26,000 families in Illinois struggle with autism," said Durbin. "Because the cost of autism-related services is so overwhelming for these families, Illinois passed legislation last year requiring health plans to provide coverage for the diagnosis and treatment of autism. It's time now for the federal government to renew and build upon the commitments it has already made in helping the millions of families across the nation struggling with autism. Our legislation would do that."
"Children and adults with autism spectrum disorders and their families have long struggled to get the services and treatment they need to lead rich and productive lives," said Casey. "Today, we launch a momentous effort to change an unacceptable status quo for the 18,500 children who are diagnosed in Pennsylvania each year with autism spectrum disorders and the hundreds of thousands of additional individuals across the country. This bill will help children get the services and treatment they need for the most positive life outcomes, for young adults and adults to have the support they need for satisfying and independent lives, and for families to have the peace of mind to provide and afford the proven treatments that will allow their children and loved ones to reach their fullest potential."
"With the growing reach of this disorder, millions of families are personally affected by autism and millions more new families are wondering if they will be too. Nowhere is this felt more than in my home state of New Jersey, where we have the highest rate of autism in the country at an astounding one in every 94 children. We badly need a national strategy that will ensure families affected by autism not only have a strong support structure but also are not left to drown in the financial costs of caring for their loved ones. From services to insurance coverage to public awareness, this legislation would make a real difference in the lives of these families, and we are hopeful that we can get it passed into law," said Menendez.
Today's legislation builds on the Combating Autism Act, signed into law in December 2006. That bill called on the federal government to increase research into the causes and treatment of autism, and to improve training and support for individuals with autism and their caretakers. This bill demonstrated the commitment of Congress to begin to delve deeper into this critically important issue for millions of families.
The Centers for Disease Control (CDC) estimate that approximately 1 in 150 people in the United States has autism or autism spectrum disorder. Individuals with autism often need assistance in the areas of comprehensive early intervention, health, recreation, job training, employment, housing, transportation, and early, primary, and secondary education. Greater coordination within these service delivery systems will enable individuals with autism and their families to access the best and most current treatment, services and research for their individualized needs - and to do so throughout the lifespan of individuals.
The Autism Treatment Acceleration Act aims to meet the comprehensive needs of, and improve the quality of life for, individuals with autism and their families by:
• Requiring that insurers provide coverage for the diagnosis and treatment of autism including Applied Behavioral Analysis therapy and assistive communication devices;
• Creating a demonstration project to develop Autism Care Centers. These centers would provide a full array of medical, behavioral, mental health, educational and family care services to individuals and families in a single location. These comprehensive treatment facilities would increase access to quality health care services and communication among health care providers, educator and other providers of services;
• Creating a demonstration project to provide a full array of services to adults with autism to improve their quality of life and enable them to live as independently as possible;
• Establishing a voluntary population-based autism case registry to help understand the root causes, rates, and trends of autism;
• Developing a national multimedia campaign to increase public education and awareness about healthy developmental milestones and autism throughout the lifespan;
• Establishing an Interdepartmental Coordinating Committee - consisting of representatives from relevant governmental agencies, researchers and the public - to coordinate government activities relating to autism;
• Establishing a national autism network to strengthen linkages between research and service initiatives at the federal, regional, state and local levels and facilitate the translation of research on autism into services and treatments that will improve the quality of life for individuals with autism and their families;
• Creating a national training initiative on autism and a technical assistance center to develop and expand interdisciplinary training and continuing education on autism.
"Autism Speaks is proud to have worked with Senators Durbin, Casey and Menendez on this legislation, which represents a remarkable leap forward in the federal government's commitment to addressing the challenges faced by individuals with autism and their families," said Elizabeth Emken, Autism Speaks vice president of Government Relations. "The insurance reform section of the bill, in particular, will have an enormous impact by finally requiring insurers to cover therapies that are literally causing families across the country to go broke as they try to provide their children with the services they need and deserve."
"This is the bill we have been waiting for for generations," said Lee Grossman, President and CEO of the Autism Society of America. "The adult services focus, care centers, national teacher training, and insurance components of this bill will complement and strengthen the important research currently underway. Moreover, this bill creates opportunities for states to develop solutions that are locally driven and relevant. As an advocate, and as a father, my heartfelt thanks to Senators Durbin, Casey, and Menendez for their efforts to help the millions of Americans affected by autism today."
Children and adults with autism spectrum disorders can show difficulties in verbal and nonverbal communication, social interactions, and sensory processing. Symptoms and behaviors may range from mild to significant, and require varying degrees of support from friends, families, service providers, and communities. There is strong consensus within the research community that intensive treatment as soon as possible following diagnosis not only can reduce the cost of lifelong care by two-thirds, but also yields the most positive life outcomes for children with autism spectrum disorders. These individuals have a right to live lives that are as full, productive and independent as possible - and with the right services, support, and treatments, they can do just that.