3 Sep

Autism CARES Act of 2014- What Does it All Mean?

National Autism Network

Posted by National Autism Network, in Legislation and Healthcare 29 August 2014 · 459 views
By now you have probably read about President Obama signing the 2014 Autism CARES Act into law, but what does this legislation mean for the autism community? The law, technically known as the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (S.2449), is actually a continuation of the Combating Autism Act of 2006 and its reauthorization (CARA) in 2011, which have allocated over $1.7 billion to the National Institutes of Health (NIH) for research grants, the CDC to monitor autism prevalence, and the U.S. Department of Health and Human Services (HHS) to train medical professionals in early detection.1 The most recent re-authorization will mandate that $260 million in annual funding be allocated for autism-related endeavors until 2019, for a grand total of $1.3 billion over the next five years.2 This bipartisan legislation will continue to fund research, treatment, and training endeavors, but some advocacy organizations feel that these funds do little to help those currently on the autism spectrum and their families. This article will provide a breakdown of funds for the Autism Cares Act and discuss the controversy that surrounds the newly signed legislation.


Past Accomplishments
Originally passed in 2006 by President George W. Bush, the Combating Autism Act has been allocating funds for a number of government agencies working with autism spectrum disorders for just under a decade. Below is a list of some of the major past accomplishments that are direct results of CAA funding:3

  • Reconstituted the Interagency Autism Coordinating Committee (IACC)  as a federal advisory body with specific membership requirements and a charge to provide federal coordination of ASD-related activities.3 The IACC’s work includes the development and annual updating of the IACC Strategic Plan for ASD Research, an annual IACC Summary of Advances in ASD Research, activities to monitor the portfolio of federal and privately funded autism research and other federal ASD activities, and multiple meetings held throughout the year.
  • The CAA required a report be submitted to Congress within 4 years after enactment of the CAA. The report titled “Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities under the Combating Autism Act of 2006 (FY 2006 – FY 2009)” can be read it its entirety here. A second report to Congress focusing on FY10-FY12 was released in 2014 and can be viewed here.
  • The Combating Autism Act of 2006 mandates a report on regarding the “information on the incidence of autism spectrum disorder and trend data of such incidence since the date of enactment of the Combating Autism Act of 2006.”4 To that end, this section of the law “reauthorizes CDC’s epidemiologic surveillance programs and establishes regional Centers of Excellence for collection, analysis and reporting of epidemiological data on autism spectrum disorders and other developmental disabilities.”5These “regional Centers of Excellence” are the sites that make up the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE), which are currently working on the Study to Explore Early Development (SEED). The Centers also “assist with the development and coordination of State autism spectrum disorders and other developmental disabilities efforts within a region.”5  Funding from this legislation has allowed the CDC to expand the Autism and Developmental Disabilities Monitoring (ADDM) Network, which released a report indicating the most recent prevalence rate for autism in this country is 1 in 68.
  • The Department of Health and Human Services (HHS) agencies responded to the CAA by expanding the Health Resources and Services Administration’s existing training programs by requiring grantees to include training specific to autism. HRSA, the only HHS agency that has awarded grants specifically as a result of the CAA, awarded approximately $164 million in grants to 110 CAA grantees from FY2008 to FY2011.6
  • The NIH created the Office of Autism Research Coordination (OARC)  to coordinate and manage the IACC. The OARC provides assistance to the IACC by communicating information about the IACC and federal ASD research activities to Congress, other government agencies, and the public, by planning meetings and conferences, assisting the IACC with its strategic planning and ASD research monitoring activities, conducting analyses and preparing reports for the IACC and Congress, and developing and disseminating information to the public about ASD.7
  • Overall spending on HRSA, NIH, CDC, and IACC autism activities increased from approximately $143.6 million in FY2006 to approximately $240.5 million in FY2011.6


The Future of Autism Legislation
The Autism CARES Act of 2014 includes a number of the same mandates originally found in the Combating Autism Act of 2006. However, a major difference is that the most recent legislation allocates a significantly larger sum of funding from the federal government. Below is a breakdown of how the $1.3 billion in funds will be spent from now until 2019:8

  • $950 million is allocated for research grants ($190 million annually)
  • $340 million will go to early detection, education, and intervention ($48 million annually)
  • $110 million will for to the U.S. Centers for Disease Control and Prevention ($22 million annually)

As you can see the bulk of the legislation is dedicated to research grants which will focus on genetics, the development of screening tools, and to “determine the evidence-based practices for interventions to improve the physical and behavioral health of individuals with [autism spectrum disorders].”10 Other stipulations of the legislation include a report on transitional services no later than two years after ratification, urges states to include respite care for caregivers of individuals with ASD to the list of available services and support within its public awareness materials, collect prevalence data on both children and adults, and requires the HHS to “designate an existing official within the department to oversee the implementation of activities under the law… [and] requires this individual to ensure the federal autism activities are ‘not unnecessarily duplicative.’”9

The Controversy
Since its inception, the Combating Autism Act seemed to be mired in controversy. Some advocacy organizations (NASN) thought that the rhetoric in regards to having to “combat” the disorder was damaging, claiming that the “war on autism” approach “offends and alienates the autistic community.”10 Although this rhetoric was viewed as offensive to some within autism community, it was not until this most recent re-authorization did Congress cave to the pressure of self-advocacy groups and renamed the Combating Autism Re-authorization Act to the Autism CARES Act of 2014.11 But the issues surrounding the Autism CARES Act do not simply revolve around its name. The entire autism community seems satisfied with the amount of funds related to autism, but many within the autism community have felt slighted by the lack of focus on those individuals on the spectrum currently without treatments, services, and supports and believe the funds should be reallocated.12  An organization known as the Autism Policy Reform Coalition, which boasts over 100,000 families nationwide, had the following additional requests concerning the latest legislation:13

  • Request for a two-office model of autism policy coordination: One office would focus on research and the other would work with all other federal agencies. The group feels the current regime, which is the IACC, is not functioning properly, stating: “[the IACC] has no authority to actually allocate funds, and it does not have the resources to implement anything.”13
  • More community input: The group feels that research should veer away from genetic and basic research and focus more on treatment, best-practice, environmental causation, and prevention. According SafeMinds, a member of the APRC, genetic studies have been funded at 5 times the recommended level over the past 5 years, while environmental studies have been funded at only 20% of their recommended level over the same time period.
  • Better epidemiology: The current standards for collecting prevalence and other autism-related data is sub-par in the coalition’s opinion, especially when you consider $110 million of the Autism CARES funding will directly towards the CDC to continue researching the prevalence of ASDs.
  • Serious action on safety: Wandering episodes are so common for children on the autism spectrum, but safety awareness also extends to bullying , seclusion and restraint, and arrests that involve individuals with autism.

Before the bill passed the Senate, certain advocacy groups unsuccessfully lobbied to the public to contact the Senate and request that the legislation include these types of stipulations before passage.14 Advocacy groups (AoA) who criticized the legislation felt that it was mindlessly spending mass amounts of funds to maintain the status quo in regards to the type of research that was being conducting and the lack of results in terms of preventive measures, treatments, and accurate prevalence rates.14 Other advocacy groups (NASN) feel that the legislation does not do enough for the current population of individuals with autism. They feel they are not given a fair say in how research dollars are spent, there is a lack of emphasis on under-served communities, and a lack of focus on women, girls, and adults on the spectrum.15

Conclusion
While the Autism CARES Act is certainly far from perfect, it does function as an example of the government working to seriously address the dramatic rise of autism spectrum disorders in this country. The speed with which the legislation was drafted, earned co-sponsors, and was signed demonstrates that awareness for the disorder has arrived in Washington. Although the bill was not enough to placate all advocacy groups, we are hopeful that the legislation will yield meaningful results that will assist future generations of people with autism. 

References:
1.    “CARA 2014 Marches Ahead in Congress under New Name.” Autism Speaks, Inc. June 10, 2014. Accessed August 28, 2014. http://www.autismspe…-under-new-name.
2.    “Menendez, Autism Speaks Celebrate Enactment of Autism CARES.” Autism Speaks, Inc. August 20, 2014. Accessed August 28, 2014. http://www.autismspe…nt-autism-cares.
3.    U.S. Department of Health and Human Services, Office of Autism Research Coordination, National Institutes of Health (On behalf of the Office of the Secretary). Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 and Combating Autism Reauthorization Act of 2011 (FY 2010 – FY 2012). February 2014. Retrieved from the Department of Health and Human Services Interagency Autism Coordinating Committee August 28, 2014. http://iacc.hhs.gov/…012/index.shtml.
4.    2006 S. 843; 109 S. 843; Accessed August 28, 2014. http://www.gpo.gov/f…-109publ416.pdf.
5.    “Combating Autism Reauthorization Act of 2011.” Association University Centers on Disabilities (AUCD). October 2011. Accessed August 28, 2014.https://www.aucd.org…Act 10-2011.pdf.
6.    “Combating Autism Act: HHS Agencies Responded with New and Continuing Activities, Including Oversight.” United States Government Accountability Office (GAO). February 2013. Accessed August 28, 2014. http://www.gao.gov/a…/660/652356.pdf.
7. “Office of Autism Research Coordination (OARC): Overview.” National Institute of Mental Health (NIH). Accessed August 28, 2014. http://www.nimh.nih….tion-oarc.shtml.
8. Musheno, Kim. “Autism CARES Act (P.L. 113-157) Detailed Summary of Changes to the Law.” Interdisciplinary Technical Assistance (iTAC) Center on Autism and Developmental Disabilities. August 11, 2014. Accessed August 28, 2014. http://www.aucd.org/…page.cfm?id=646.
9.    2014 H.R. 4631; 113 H.R. 4631; Accessed August 28, 2014. https://beta.congres…-113s2449rs.pdf.
10.   “Comments at November 30, 2007 IACC Meeting.” Autistic Self Advocacy Network (ASAN). December 8, 2007. Accessed August 28, 2014.http://autisticadvoc…7-iacc-meeting/.
11.   Diament, Michelle. “Congress to ‘Combat’ Autism No More.” Disability Scoop. June 12, 2014. Accessed August 28, 2014. http://www.disabilit…utism-no/19436/.
12.   Olmstead, Dan. “Bad Bill Rising: House, Senate Primed to Screw Autism Families Once Again.” Age of Autism (blog), June 24, 2014. Accessed August 28, 2014.http://www.ageofauti…once-again.html.
13.   Weisman, Katie. “We Can Do Better – Introducing the Autism Policy Reform Coalition (APRC).” SafeMinds. May 18, 2014. Accessed August 28, 2014.http://www.safeminds…form-coalition/.
14.   “Autism Action Network Alerts: Autism Cares Act Needs Major Improvement Before Passage.” Age of Autism (blog), July 30, 2014.http://www.ageofauti…mprovement.html.
15.   “ASAN Statement on Autism CARES Act.” Autism Self Advocacy Network (ASAN). June 10, 2014. Accessed August 28, 2014. http://autisticadvoc…tism-cares-act/. 

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