Autism CARES Act Passed By Congress; Bill To Be Signed By President

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Autism CARES Act Passed By Congress; Bill To Be Signed By President


September 19, 2019


Menendez, Enzi Applaud Final Passage of Autism CARES to Continue Critical Research, Education, Supports

National autism rate: 1 in 59 American children and rising

NJ’s highest rate in the nation now 1 in 34

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 applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and “across [their] lifetime.”  The bill now heads to the President for his signature. 

“Our legislation marks a leap forward in federal autism policy by recognizing the needs to invest in research to address an individual’s evolving needs across a lifespan,” said Sen. Menendez.  “I want to thank the families and advocates who have stood with us and inspired this fight to ensure autistic Americans thrive throughout their lives.  With autism’s growing prevalence in New Jersey and across the nation, the investment we make through Autism CARES is more critical than ever. This is about empowerment. This is about dignity. This is about compassion.  This is about ensuring that every individual with ASD and others with intellectual and developmental disabilities are able to reach their God-given potential.”

“I am glad the Senate unanimously reauthorized the Autism CARES Act to promote research, education and awareness into autism spectrum disorder and other developmental disabilities,” said Sen. Enzi. “This successful program helps us better understand causes and symptoms of autism spectrum disorder and improve the lives of millions of people affected by it.” 

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 

Autism CARES 2019 builds upon the current, Menendez-authored law, which expires in September, and shapes federal autism policy and investment in research, early detection, and research to develop new treatments and therapies for those with ASD and other developmental disabilities. 

The bipartisan Autism CARES 2019 affirms Congress’ commitment to individuals with autism spectrum disorder and other intellectual and developmental disabilities, and their families.  In addition to reauthorizing existing federal autism programs through 2024, the legislation 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;

·         Authorizes $296 million for the National Institutes of Health (NIH) for research;

·         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.

In February, Sen. Menendez visited Quest Autism Programs in Midland Park, N.J., a community-based day program for adults with autism, to announce introduction of Autism CARES 2019.  During Autism Awareness Month in April, Sen. Menendez toured LifeTown, a state-of-the-art, 53,000-square-foot, educational, recreational and therapeutic facility in Livingston, N.J., serving the needs of individuals of all ages with ASD, to push for the bill’s passage.

“Autism New Jersey is thrilled to see the results of Senator Menendez’s 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.”

“I’m happy that Autism CARES is one step closer to being reauthorized. I commend Senator Menendez for advocating on behalf of children and adults living with autism and thank him for getting this passed in the Senate,” said Dr. Bridget Taylor, executive director of Alpine Learning Group. “With the rate of children identified as having autism in New Jersey as one in 34, it is essential that Autism CARES be reauthorized. 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.”

“The SPAN Parent Advocacy Network (SPAN), New Jersey’s one-stop for families of children with ASD and other special needs, is excited about the Senate passage of the Autism CARES Act this week.  We are particularly appreciative of the new requirements for a report on the health and well-being of individuals with autism, greater emphasis on research on services and supports across the lifespan, and the increase in the minimum number of individuals with ASD and parents/guardians on the IACC from two to three each.  People with disabilities and their families have the greatest commitment to improving services to and outcomes for their families and their peers, and thus should be at the center of research and policy regarding their lives,” said Diana Autin, executive co-director of SPAN Parent Advocacy Network. “As the state with one of, if not the highest, rates of ASD in the country, we will benefit from these improvements to the law and its implementation, and thank Senator Menendez for his tireless advocacy to ensure continued funding for this critical legislation.” 

“Quest Autism Programs is thrilled to hear of the approval of the re-authorization of the Autism CARES Act in the Senate this week, which will help bring the much needed resources and awareness to the rapidly growing adult population of individuals with ASD,” said Carrie Hennessy, clinical director of Quest Autism Programs. “It is encouraging to see the attention and efforts given to those with special needs across their lifespan, due in large part to the hard work and advocacy of Senator Menendez, the compassionate professionals in this field, and the devoted families of the children and adults that this will benefit.”

“We are ecstatic about the passage of the Autism CARES Act of 2019 as it’s a positive direction in legislation that has been in a constant upward trajectory since its beginning in 2006.  This is a monumental day for our entire community but especially adults with autism with the emphasis on ‘across the lifespan,’ in the legislation.  And I appreciate Senator Menendez’s advocacy on behalf of the autism community and working so hard to ensure the passage of this vital piece of legislation. With this 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 professional speaker, author and leading advocate, said. “I know this feeling oh too well as an adult on the spectrum who grew up with challenges during my adolescence such as being nonverbal until two-and-a-half. I applaud the bipartisan support along with all our community who advocated to make this possible.”

“Senator Menendez has been a strong advocate for the autism community and I appreciate his hard work in passing this critical piece of legislation,” said Toni Pergolin, President and CEO of Bancroft.  “In a state with the highest rate of autism, this bill will benefit autism programs across Southern New Jersey.  I’m happy that, for the first time, there is a focus on people with autism across their lifetime. It’s vital that the children and adults we help continue to receive the care and tools we provide so they can go on to live full, healthy, and happy lives. 

“Spectrum360 applauds the passage of the Autism CARES Act.  It will finally provide critically needed funding for adult services to develop an essential continuum of program options to meet the unique needs of adults on the autism spectrum,” said Dr. Bruce Ettinger, executive director of Spectrum360. “It is essential that funding for transition and habilitation as well as supported employment services are included in this continuum.  I thank Senator Menendez for ensuring the passage of this critical bill and working on behalf of the autism community.”

“We are excited that Congress is reenacting the Autism CARES Act, and especially appreciate and look forward to the implementation of a new provision extending the Autism CARES Act to adult services,” said Jonah Zimiles, an autism parent and co-founder of [words] Bookstore, an independent bookstore in Maplewood, N.J., that provides employment and vocational training for individuals with autism.  “We are grateful to Senator Menendez for his extraordinary and consistent leadership on behalf of the autism community in New Jersey and throughout the United States.”

“We are so gratified to see this important piece of legislation reauthorized and thankful to Sen. Menendez for his leadership to get this accomplished,” said Amalia Duarte, public affairs director for ECLC of New Jersey.  “It is critical to ensure the nearly 500 adults in ECLC of New Jersey’s employment and day programs—and all adults with special needs across the county—continue to receive services for as long as needed.

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