Durbin Recognizes Importance of World Autism Awareness Day

Durbin’s American Cures Act would help fund research and treatments on Autism

[WASHINGTON, DC] – In a statement for the Senate record, U.S. Senator Dick Durbin (D-IL) today recognized the importance of World Autism Awareness Day. Approximately one million individuals in the United States have autism and according to a report by the Centers for Disease Control released last week, 1 in every 68 children have autism in the United States, making it the fastest-growing serious developmental disability in the United States. In Illinois, nearly 26,000 families live with autism.

“Everywhere I go in Illinois, I meet people whose lives have been affected by autism. Nearly 26,000 families in my state live with autism. Parents not only worry about getting the services they need for their children when they are young, they worry about how to care for their children as they mature into adults,” Durbin said. “In this country, people with autism confront a precipitous drop in services after early adulthood. We need to do more. We need to help people with autism live safe, productive lives achieving their full potential by ensuring they can get the services that enhance their quality of life.”

Earlier today, Durbin spoke on the Senate Floor to recognize World Autism Awareness day, and the importance of increasing funding for medical research.

Video of Durbin’s speech is available here.

This year, more children will be diagnosed with autism than with AIDS, diabetes, and cancer combined. Earlier this month, Senator Durbin introduced the American Cures Act, a bill that would enhance funding for future research breakthroughs, for conditions such as autism spectrum disorder.

The American Cures Act would augment federal appropriations for biomedical research with a mandatory trust fund dedicated to steady growth in research conducted at National Institutes of Health (NIH), the Centers for Disease Control (CDC), the Department of Defense Health Program (DHP), and the Veterans Medical & Prosthetics Research Program. Each year, the bill would increase funding for each agency and program at a rate of GDP-indexed inflation plus 5 percent. This steady, long-term investment would allow the agencies to plan and manage strategic growth while maximizing efficiencies.

According to the advocacy group Autism Speaks, new research estimates that autism’s costs to the nation have reached $137 billion per year. The figure expands on previous estimates by including indirect costs such as lost family income and productivity in addition to the direct costs of autism-associated care.

Children and adults with autism spectrum disorders can have difficulties in verbal and nonverbal communication and social interactions. Symptoms and behaviors may range from mild to significant, and require varying degrees of support from friends, families, service providers, and communities. However, there is strong consensus within the research community that early diagnosis and intensive treatment following diagnosis not only can reduce the cost of lifelong care by two-thirds, but also yield the most positive outcomes.

The full text of Senator Durbin’s statement for the record is below:

World Autism Awareness Day

Congressional Record Statement

Senator Richard J. Durbin

April 2, 2014

Mr. DURBIN. Today is the seventh annual World Autism Awareness Day. Approximately one million people in the United States have autism, including 1 in 68 children. This year, more children will be diagnosed with autism than with AIDS, diabetes, and cancer combined. Autism is the fastest-growing serious developmental disability in the United States and costs the nation over $35 billion per year. The severity of autism and other autism spectrum disorders vary along a continuum, however those affected often suffer from co-morbidities, such as gastrointestinal disorders, sleep disturbance, seizures, tics, language deficits, depression, and attention deficit hyperactivity disorder.

Autism affects the individuals with autism and their families physically, psychologically, socially, and financially. It can be a major factor contributing to family financial difficulties and family disruption. Parents can be overwhelmed with the challenges of caring for a child with autism, making it hard to provide enough attention and care to siblings. And the child who has autism will likely face educational and employment challenges throughout their life.

Everywhere I go in Illinois, I meet people whose lives have been affected by autism. Nearly 26,000 families in my state live with autism. Parents not only worry about getting the services they need for their children when they are young, they worry about how to care for their children as they mature into adults.

I met two loving parents in Illinois whose 20 year-old son is profoundly affected by autism and has struggled with significant behavioral problems. He was in a special education program at school, but his teachers didn’t know how to deal with his behavioral problems and he was suspended on numerous occasions. These parents love their son, and they worry every day about what will happen to him when they are too old to care for him.

In this country, people with autism confront a precipitous drop in services after early adulthood. We need to do more. We need to help people with autism live safe, productive lives achieving their full potential by ensuring they can get the services that enhance their quality of life.

Last Congress, I introduced the Autism Services and Workforce Acceleration Act. This legislation would authorize federal funding for a wide range of service, treatment, support and research initiatives that would help families impacted by autism spectrum disorders. My bill also includes a provision that helps ensure youth and adults with autism can get essential post-secondary education, vocational training, employment, housing, transportation, and health services.

While there is no cure for autism, early interventions – such as specialized educational and behavioral programs – significantly improve outcomes and diminish symptoms. One common form of therapy is applied behavioral analysis, an intensive behavioral therapy to improve cognitive and social functioning. Children who have received early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior. Behavioral therapy is a cornerstone of managing autism spectrum disorders and can help to diminish symptoms. In spite of evidence demonstrating the effectiveness of behavioral therapies, many insurance plans have not covered behavioral treatments.

I have tried to change that, and we are making progress, albeit slowly. In January 2011, I sent a letter to the Institute of Medicine (IOM) urging it to include applied behavioral analysis among the recommended services that should be included in the essential benefits that all health insurance plans must cover under the Affordable Care Act. IOM’s final recommendation encouraged including applied behavioral therapy as an essential benefit, the Administration’s list of essential benefits does not require behavioral therapy to be covered. However, Illinois is one 37 states that require health plans to provide coverage for the diagnosis and treatment of autism. These services are important, and I will continue working to improve coverage of these services on health insurance plans.

In 2006, the Combating Autism Act was signed into law and then reauthorized for another three years in 2011. This law authorized $1.7 billion for autism research, services, training and monitoring by the National Institutes of Health, the Centers for Disease Control and Prevention, and the Health Resources and Services Administration. I have introduced legislation to reauthorize these programs, including the developmental disabilities surveillance and research program; the autism education, early detection, and intervention program; and the interagency Autism Coordinating Committee. Reauthorizing these programs will provide a full array of medical, behavioral, mental health, educational, and family care services families across the country.

It’s time now for Congress to renew and build on the commitments it has already made to help the millions of families across the nation struggling with autism. I urge my colleagues to join me in increasing awareness of this important issue and support reauthorization for the Combating Autism Act.

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