Developmental disabilities surveillance and research program

The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may award grants or cooperative agreements to eligible entities for the collection, analysis, and reporting of State epidemiological data for children and adults with autism spectrum disorder and other developmental disabilities. An eligible entity shall assist with the development and coordination of State autism spectrum disorder and other developmental disability surveillance efforts within a region. In making such awards, the Secretary may provide direct technical assistance in lieu of cash. In submitting epidemiological data to the Secretary pursuant to paragraph (1), an eligible entity shall report data according to guidelines prescribed by the Director of the Centers for Disease Control and Prevention, after consultation with relevant State, local, and Tribal public health officials, private sector developmental disability researchers, and advocates for individuals with autism spectrum disorder and other developmental disabilities. To be eligible to receive an award under paragraph (1), an entity shall be a public or nonprofit private entity (including a health department of a State or a political subdivision of a State, a university, any other educational institution, an Indian Tribe, or a Tribal organization), and submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require. The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall, subject to the availability of appropriations, award grants or cooperative agreements for the establishment or support of regional centers of excellence in autism spectrum disorder and other developmental disabilities epidemiology for the purpose of collecting and analyzing information on the number, incidence, correlates, and causes of autism spectrum disorder and other developmental disabilities for children and adults across the lifespan. The center will collect, analyze, and report autism spectrum disorder and other developmental disability data according to guidelines prescribed by the Director of the Centers for Disease Control and Prevention, after consultation with State, local, and Tribal public health officials, private sector developmental disability researchers, advocates for individuals with autism spectrum disorder, and advocates for individuals with other developmental disabilities. The center will develop or extend an area of special research expertise (including genetics, epigenetics, and epidemiological research related to environmental exposures), immunology, and other relevant research specialty areas. The center will identify eligible cases and controls through its surveillance system and conduct research into factors which may cause or increase the risk of autism spectrum disorder and other developmental disabilities. The Secretary shall coordinate the Federal response to requests for assistance from State health, mental health, and education department officials regarding potential or alleged autism spectrum disorder or developmental disability clusters. The terms “Indian Tribe” and “Tribal organization” have the meanings given such terms in section 1603 of title 25. The term “other developmental disabilities” has the meaning given the term “developmental disability” in section 15002(8) of this title. The term “State” means each of the several States, the District of Columbia, the Commonwealth of Puerto Rico, American Samoa, Guam, the Commonwealth of the Northern Mariana Islands, the Virgin Islands, and the Trust Territory of the Pacific Islands. This section shall not apply after September 30, 2029. The Secretary of Health and Human Services (referred to in this section as the ‘Secretary’) may, at the request of a State, Indian Tribe, Tribal organization, locality, or territory, provide training and technical assistance to such jurisdiction on the manner in which Federal funding administered by the Secretary may be used to provide individuals with autism spectrum disorder and other developmental disabilities with access to evidence-based services, tools, and technologies that support communication needs. The Secretary shall annually prepare and submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report summarizing any technical assistance provided by the Secretary in the preceding fiscal year under subsection (a) and any advancements in the development or evaluation of such evidence-based services, tools, and technologies.” The Secretary of Health and Human Services shall designate an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities. implement autism spectrum disorder activities, taking into account the strategic plan developed by the Interagency Autism Coordinating Committee under section 399CC(b) of the Public Health Service Act (42 U.S.C. 280i–2(b)); and ensure that autism spectrum disorder activities of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative.” To be eligible to receive a grant or cooperative agreement under paragraph (1), an entity shall submit to the Secretary an application containing such agreements and information as the Secretary may require, including an agreement that the center to be established or supported under the grant or cooperative agreement shall operate in accordance with the following: In this part: The official designated under subsection (a) shall— (Source: (July 1, 1944, ch. 373, title III, § 399AA, as added Pub. L. 109–416, § 3(a), Dec. 19, 2006, 120 Stat. 2822; amended Pub. L. 112–32, § 2(1), Sept. 30, 2011, 125 Stat. 361; Pub. L. 113–157, § 3, Aug. 8, 2014, 128 Stat. 1831; Pub. L. 116–60, § 3(a), Sept. 30, 2019, 133 Stat. 1111; Pub. L. 118–83, div. B, title II, § 201(a), Sept. 26, 2024, 138 Stat. 1537; Pub. L. 118–180, § 3(a), Dec. 23, 2024, 138 Stat. 2615.))