Menendez, Enzi Unveil New Autism Legislation to Address Challenges ‘Across the Lifespan,’ Continue Critical Research

Menendez, Enzi Unveil New Autism Legislation to Address Challenges ‘Across the Lifespan,’ Continue Critical Research

National autism rates on the rise: 1 in 59 American children

WASHINGTON, D.C. – U.S. Senators Bob Menendez (D-N.J.) and Mike Enzi (R-Wyo.), senior members of the Senate Finance Committee that sets national health policy, today unveiled the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019, legislation that shapes federal autism policy and investment in research, early detection, and research to develop new treatments and therapies for those with autism spectrum disorder (ASD) and other developmental disabilities.  The bill builds upon the current, Menendez-authored law, which expires in September, and, for the first time, includes language to ensure those efforts to address the challenges and needs of individuals well into adulthood and “across [their] lifetime.”

One in 59 children nationwide have ASD, according to the latest study by the Centers for Disease Control and Prevention (CDC) released last year, a jump of 15% since the previous study was conducted in 2016 and up from one in 166 in 2005.  New Jersey has the highest rate of autism, with one in 34 children identified with ASD.

“I cannot tell you how many parents I’ve met over the years who lay awake in bed worrying what will happen to their kids when they grow out of school-based support, or what will come of their adult children on the spectrum when they are gone someday.  These hopes and dreams and fears have been at the forefront of my mind while drafting the Autism CARES Act of 2019,” said Sen. Menendez.  “With autism’s growing prevalence in New Jersey, we cannot afford to ignore this challenge.  That’s why it’s so critical we prevail in expanding the focus of the federal government to helping Americans with autism thrive throughout their lives.”

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“This legislation continues the good work of the Autism CARES Act, which promotes research, education and awareness into autism spectrum disorder and other developmental disabilities,” Sen. Enzi said.  “It is important that we improve our understanding of the causes and symptoms of autism spectrum disorder and that we find solutions to improve the lives of those affected by it.  We must ensure that there are programs in place to meet the diverse needs of persons with autism spectrum disorder and their families.  The Autism CARES Act programs serve a critical role in that mission, and this bill will ensure they do not expire.”

The bipartisan Autism CARES 2019 affirms Congress’ commitment to individuals with autism spectrum disorder and other developmental disabilities and their families.  Companion legislation has been introduced in the House of Representatives.

In addition to reauthorizing existing federal autism programs through 2024, Autism CARES 2019 strengthens those programs by adding the phrase “across the lifespan” where appropriate to ensure they can address the needs of individuals with ASD and other intellectual and developmental disabilities throughout all stages of life.  The provision builds upon key elements of Sen. Menendez’s Assistance in Gaining Experience, Independence and Navigation (AGE-IN) Act that were incorporated in the 2014 law to address the needs of youth and young adults as they transition out of school-based support to independent adulthood. 

Autism CARES 2019 also:

  • Authorizes research under the National Institutes of Health (NIH) to address the entire scope of autism spectrum disorder;
  • Designates regional centers of excellence for ASD research and epidemiology
  • Directs activities to increase public awareness of autism, improve the ability of health providers to use evidence-based interventions, and increase early screening and detection
  • Authorizes $23.1 million to the CDC for developmental disability surveillance and research;
  • Authorizes $50.6 million to the Health Resources and Services Administration (HRSA) for education, early detection, and intervention, and allows HRSA to prioritize new grant applicants in rural or underserved areas;
  • Requires the Department of Health and Human Services (HHS) to provide a report to Congress on the health and well-being of individuals of all ages with ASD and other developmental disabilities. 

“On behalf of the millions of people with autism and their families, Autism Speaks celebrates the introduction of the Autism CARES Act of 2019,” said Autism Speaks President and CEO Angela Geiger.  “Autism CARES is the foundation of the federal government’s efforts around autism.  We ask Congress to act expeditiously on this legislation.”

"AUCD is grateful to the bipartisan bicameral champions of the Autism CARES legislation for recognizing the critical value of the interdisciplinary training, research, and other activities supported by the bill,” Andy Imparato, executive director of the Association of University Centers on Disabilities (AUCD) said.  “We look forward to a speedy reauthorization and continued progress in serving autistic individuals and their families.”

“Quest Autism Programs, an adult day program serving young adults with ASD in Bergen County, fully supports Autism CARES and Senator Menendez in his valiant efforts to advocate for individuals with ASD and their families,” said Carrie Hennessy, clinical director of Quest Autism Programs.  “The reauthorization of the Autism CARES Act is critical to providing the necessary resources and supports for those individuals with ASD across the lifespan in order for them to have a healthy and fulfilling quality of life.  The shortage of services for adults with developmental disabilities and opportunities for employment in the state is staggering, and this Act would allow for vast improvements for this population.”

“Senator Menendez’s leadership in introducing the reauthorization of Autism CARES 2019 brings resources and recognition that Autism is a condition across the lifespan, and the imperative of addressing the health and well-being of adults and children with Autism and their families,” said Dr. Deborah M. Spitalnik, Rutgers Robert Wood Johnson Medical School professor of pediatrics and director of NJLEND and The Boggs Center on Developmental Disabilities.  “For New Jersey, with our diverse population and the highest reported prevalence of Autism in the country, having received a Leadership Education in Neurodevelopmental Disabilities [LEND] grant has enabled Rutgers to train a diverse group of clinical leadership health professionals and families to provide screening, diagnosis and treatment to people with Autism, and address the disparities in access to services and support.” 

"Autism New Jersey commends Senator Menendez for his steadfast leadership on behalf of the autism community here in New Jersey and across the nation,” noted Suzanne Buchanan, Autism New Jersey’s executive director.  “The reauthorization of the Autism CARES Act will provide vital federal support to monitor prevalence, train healthcare professionals, promote collaboration among federal agencies, and address individuals’ and families’ challenges across the lifespan.”

"The Autism CARES Act of 2019 is a positive direction in legislation that has been in a constant upward trajectory since its beginning in 2006.  By putting an emphasis on 'across the lifespan,' we are making it known that our children with autism will grow up to be adults with autism and we need to be ready for them with supports,” Kerry Magro, a leading advocate and individual with autism, said.  “I know this feeling oh too well as an adult on the spectrum who grew up with challenges during my adolescence. If Congress does not reauthorize funding before the act expires in September 2019 we are doing a disservice to the millions of Americans around the world who are impacted by autism and their families." 

“Noah’s Ark Institute applauds Senator Menendez for the Autism CARES 2019 reauthorization legislation. It is with the understanding that no one entity, governmental, private nor individual can find solutions on their own. There is a shared responsibility to support each individual with autism and their families. This shared responsibility allows our precious family members on the full spectrum of autism to live, thrive, and attain a future that celebrates their unique gifts, while supporting their lifelong challenges, so they can have a future with dignity and promise,” said B. Madeleine Goldfarb, director of Noah’s Ark Institute.  “There is so much, yet, we need to learn.  The Autism Cares 2019 reauthorization, and the steadfast support of Senator Menendez, help us achieve that future.” 

“The Autism CARES Act is critical to determining the causes of autism; training physicians to diagnose or rule out the disorder; improving services to children and adults – especially those for whom autism presents the most complex challenges,” said Michael K. Decker, president and CEO of Eden Autism Services.  “Given ASD’s financial and emotional toll on families and - by extension - employers, schools, and communities at large, Congress should fully fund Autism CARES and remain steadfast in addressing the Country’s fastest growing developmental disability.”

"The reauthorization of the Autism CARES Act is essential funding in the fight to understand, treat and expand the number of health professionals trained to recognize and diagnose autism.  It is especially needed in our cities, since statistics show that our children in the urban areas are diagnosed later in age, which can impede treatment," said Michele Adubato, founder of The Center for Autism at Newark’s North Ward Center.

“Education, Careers & Lifelong Community (ECLC) of New Jersey provides lifelong services to nearly 900 children and adults with special needs, from our schools through employment opportunities and day programs,” said Director Dot Libman, who oversees ECLC’s P.R.I.D.E. Adult Program.  “We wholeheartedly support this critical piece of legislation, so parents can have peace of mind that their child with special needs will have access to services as an adult.”

“Senator Menendez remains one of the greatest advocates on behalf of the increasing number of individuals on the autism spectrum,” said Dr. Bruce Ettinger, executive director of Spectrum360.  “We were very pleased that he added the phrase, ‘across the lifespan’ to the bill, recognizing that the needs of individuals with autism and other developmental disabilities must be addressed throughout all stages of their life.  We applaud the inclusion of grants to address rural and underserved populations and particularly to encourage more physicians to develop expertise in this area.  Increasing funding for surveillance and research as well as education, early detection, and intervention really recognizes that programs and services must be expanded to address the increasing incidence of autism and develop best practices in helping this population flourish.” 

“With the rate of children identified as having autism in New Jersey as one in 34, it is essential that Autism CARES be reauthorized.  There are many laudable programs funded through Autism CARES, as well as the availability of funds for much needed research into causes of autism and effective clinical treatments,” said Dr. Bridget Taylor, executive director of Alpine Learning Group.  “Children with autism grow up to be adults with autism and services and research for this population has been lacking.  Inclusion of ‘lifelong’ into the Autism CARES will prompt much needed research and clinical practice for this population.  I commend Senator Menendez for advocating on behalf of children and adults affected by autism.”

 

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