Section 1 Short title
This Act may be cited as the “Global Autism Assistance Act of 2013”.
Global Autism Assistance Act of 2013
A BILL
To establish a health and education grant program related to autism spectrum disorders, and for other purposes.
Sec. 2 Findings
Congress finds the following:
The occurrence of autism spectrum disorders (ASD) has increased during the past decade from an estimated one in 500 to an estimated one in 110, according to data released by the Centers for Disease Control and Prevention (CDC) in December 2009. CDC classified as suffering from ASD children whose behaviors were consistent with the DSM–IV–TR criteria for Autistic Disorder, Asperger Disorder, and Pervasive Developmental Disorder—Not Otherwise Specified (PDD–NOS).
Autism is a complex neurological disorder that affects an individual in the areas of social interaction and communication. Because it is a spectrum disorder, it affects each individual differently and to varying degrees of severity. People with autism process and respond to information in unique ways. In some cases, coexisting medical issues and aggressive or self-injurious behavior may be present.
The increased number of children diagnosed with autism is a growing and urgent concern for families, healthcare professionals, and educators, as the health and education systems struggle to respond to the needs of this population in a comprehensive manner.
The prevalence of autism in developing countries is also growing rapidly, and health and education systems in these countries are particularly ill-equipped to deal with these issues. According to the World Health Organization, tens of millions of individuals in Africa are affected by autism.
Children with autism who receive intensive and appropriate educational services before age five often make significant functional improvements. In the United States, significant efforts are being pursued to expand early diagnosis and the provision of these services. In a report on the identification, evaluation and management of children with autism, the American Academy of Pediatrics recommended in November 2007 that all children should be screened for autism twice by the age of two, even if they have no symptoms. Early screening and services for autism are sorely lacking in most of the developing world. An opportunity exists to use United States expertise to significantly aid children and families in developing countries, for relatively small costs.
Sec. 3 Global Autism Assistance Program
Establishment and purpose— The Administrator for the United States Agency for International Development shall establish and administer a health and education grant program to be known as the “Global Autism Assistance Program” to—
support activities under subsection (c)(2) by nongovernmental organizations and other service providers, including advocacy groups, focused on autism in developing countries; and
establish a “teach the teachers” program under subsection (d) to train health and education professionals working with children with autism in developing countries.
Designation of eligible regions— Not later than 120 days after the date of the enactment of this Act, the Administrator, in consultation with knowledgeable autism organizations such as the World Autism Organization, the Autism Society of America, and Autism Speaks, shall designate not fewer than two regions in developing countries that are determined to—
require assistance in dealing with autism; and
have sufficient familiarity with issues related to autism to make effective use of the Global Autism Assistance Program.
Selection of implementing NGO—
In general— Not later than 180 days after the designation of eligible regions pursuant to subsection (b), the Administrator shall select and award a grant under this section to a nongovernmental organization with experience in autism-related issues to implement the Global Autism Assistance Program through selection and awarding of grants to local service providers and advocacy groups focused on autism.
Activities— A local service provider or advocacy group that receives a grant under paragraph (1) may use such grant to carry out any of the following activities (including, as appropriate, the translation into local languages of relevant English-language publications):
Education and outreach to the public— Use public service announcements and other public media to help the public become more aware of the signs of autism so that children with autism can be diagnosed and treated earlier.
Support to families— Development of resources for families, such as online web resource centers in local languages, dissemination of materials to parents of newly diagnosed children, such as information contained in the Centers for Disease Control and Prevention’s publication entitled “Learn the Signs, Act Early”, or other suitable alternatives, and dissemination of educational aids and guides to help parents with their children’s development.
Support to educational institutions— Funding for schools or other educational institutions, focusing on teachers of the youngest students, and including the distribution of equipment or of the materials referred to in subparagraph (B).
Support to clinics and medical centers— Provision of funding to clinics and medical centers with proven records in addressing autism to assist with operating expenses, including personnel, equipment supplies, and facilities, development of assessment testing for autism, and acquisition of specialized equipment, such as augmentative communication devices.
Applications for grants—
Submission of applications— To be eligible to receive a grant from the implementing nongovernmental organization, a local service provider or advocacy group shall submit to such implementing nongovernmental organization an application at such time, in such manner, and containing such information as such implementing nongovernmental organization may require.
Establishment of screening board—
In general— The implementing nongovernmental organization responsible for implementing the Global Autism Assistance Program shall establish a screening board to be known as the “Project Advisory Board” to review for content and appropriateness applications from local service providers or advocacy groups submitted in accordance with subparagraph (A).
Membership— The members of the Project Advisory Board shall be appointed by the implementing nongovernmental organization, in consultation with the Administrator, and in accordance with the following provisions:
Each member shall serve for a term of one year and each member may serve as many as three consecutive terms.
A member of the Project Advisory Board may continue to serve after the expiration of the term of such member until such time as a successor is appointed.
Membership of the Project Advisory Board shall include at least seven voting members who are members of autism advocacy groups, professionals working with autism, or otherwise associated with the autism community. Among the voting members of the Board shall be at least two parents from different families of individuals with autism, one medical professional working with autism, one teacher of individuals with autism, and one individual who has autism. Efforts shall be made to include on the Project Advisory Board individuals with experience working in the developing world.
Membership of the Project Advisory Board shall include non-voting members as determined appropriate by the Administrator.
Membership of the Project Advisory Board shall be chosen so as to ensure objectivity and balance and to reduce the potential for conflicts of interest.
Support and assistance— The implementing nongovernmental organization shall provide, contract for, and coordinate technical assistance in support of its mission in meeting the goals and purposes of this Act.
Teach the teachers— The implementing nongovernmental organization, acting on behalf of the Administrator, in consultation with the Project Advisory Board, shall establish a program, to be known as the “Teach the Teachers Program”, to—
identify health and education professionals to receive specialized training for teaching and working with youth with autism, including training conducted in two- or three-day workshops at locations within one of the two regions designated pursuant to subsection (b); and
conduct training through two- or three-day biomedical conferences in the two regions designated pursuant to subsection (b), including bringing medical and psychological specialists from the United States to train and educate parents and health professionals who deal with autism, including training related to biomedical interventions that can affect autism, how nutrition and various metabolic issues can impact behavior, the role of applied behavioral analysis, and various occupational and speech therapies in fighting autism.
Funding— To carry out this Act, the Administrator shall allocate amounts that have been appropriated or otherwise made available to the United States Agency for International Development.
Autism defined— For purposes of this Act, the term autism means all conditions consistent with autism spectrum disorders described in section 2(1).