Autism education, early detection, and intervention

42 U.S.C. § 280i–1
in effect
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(a) PurposeIt is the purpose of this section—(1) to increase awareness, reduce barriers to screening and diagnosis, promote evidence-based interventions for individuals with autism spectrum disorder and other developmental disabilities, and train professionals to utilize valid and reliable screening tools to diagnose or rule out and provide evidence-based interventions for individuals with autism spectrum disorder and other developmental disabilities across their lifespan; and (2) to conduct activities under this section with a focus on an interdisciplinary approach (as defined in programs developed under section 501(a)(2) of the Social Security Act [42 U.S.C. 701(a)(2)]) that will also focus on specific issues for children who are not receiving an early diagnosis and subsequent interventions. (b) In generalThe Secretary shall, subject to the availability of appropriations, establish and evaluate activities to—(1) provide culturally and linguistically appropriate information and education on autism spectrum disorder and other developmental disabilities to increase public awareness of developmental milestones; (2) promote research, which may include research that takes a community-based approach, into the development and validation of reliable screening and diagnostic tools for individuals with autism spectrum disorder and other developmental disabilities and disseminate information regarding those screening and diagnostic tools; (3) promote early screening of individuals at increased likelihood for autism spectrum disorder and other developmental disabilities as early as practicable, given evidence-based screening techniques and interventions; (4) promote evidence-based screening techniques and interventions for individuals with autism spectrum disorder and other developmental disabilities across their lifespan, which may give consideration to the perspectives of parents and guardians; (5) increase the number of individuals who are able to confirm or rule out a diagnosis of autism spectrum disorder and other developmental disabilities; (6) increase the number of individuals able to provide evidence-based interventions for individuals diagnosed with autism spectrum disorder or other developmental disabilities; and (7) promote the use of evidence-based interventions for individuals at increased likelihood for autism spectrum disorder and other developmental disabilities as early as practicable. (c) Information and education(1) In generalIn carrying out subsection (b)(1), the Secretary, in collaboration with the Secretary of Education and the Secretary of Agriculture, shall, subject to the availability of appropriations, provide culturally and linguistically appropriate information regarding autism spectrum disorder and other developmental disabilities, risk factors, characteristics, identification, diagnosis or rule out, and evidence-based interventions to meet the needs of individuals with autism spectrum disorder and other developmental disabilities across their lifespan and the needs of their families through—(A) Federal programs, including—(i) the Head Start program; (ii) the Early Start program; (iii) the Healthy Start program; (iv) programs under the Child Care and Development Block Grant Act of 1990 [42 U.S.C. 9857 et seq.]; (v) programs under title XIX of the Social Security Act [42 U.S.C. 1396 et seq.] (particularly the Medicaid Early and Periodic Screening, Diagnosis and Treatment Program); (vi) the program under title XXI of the Social Security Act [42 U.S.C. 1397aa et seq.] (the State Children’s Health Insurance Program); (vii) the program under title V of the Social Security Act [42 U.S.C. 701 et seq.] (the Maternal and Child Health Block Grant Program); (viii) the program under parts B and C of the Individuals with Disabilities Education Act [20 U.S.C. 1411 et seq., 1431 et seq.]; (ix) the special supplemental nutrition program for women, infants, and children established under section 1786 of this title; and (x) the State grant program under the Rehabilitation Act of 1973 [29 U.S.C. 701 et seq.]. (B) State licensed child care facilities; and (C) other community-based organizations or points of entry for individuals with autism spectrum disorder and other developmental disabilities to receive services. (2) Lead agency(A) DesignationAs a condition on the provision of assistance or the conduct of activities under this section with respect to a State, the Secretary may require the Governor of the State—(i) to designate a public agency as a lead agency to coordinate the activities provided for under paragraph (1) in the State at the State level; and (ii) acting through such lead agency, to make available to individuals and their family members, guardians, advocates, or authorized representatives; providers; and other appropriate individuals in the State, comprehensive culturally and linguistically appropriate information about State and local resources regarding autism spectrum disorder and other developmental disabilities, risk factors, characteristics, identification, diagnosis or rule out, available services and supports (which may include respite care for caregivers of individuals with autism spectrum disorder or other developmental disabilities), and evidence-based interventions. (B) Requirements of agencyIn designating the lead agency under subparagraph (A)(i), the Governor shall—(i) select an agency that has demonstrated experience and expertise in—(I) autism spectrum disorder and other developmental disability issues; and (II) developing, implementing, conducting, and administering programs and delivering education, information, and referral services (including technology-based curriculum-development services) to individuals with autism spectrum disorder and developmental disabilities and their family members, guardians, advocates or authorized representatives, providers, and other appropriate individuals locally and across the State; and (ii) consider input from individuals with autism spectrum disorder and developmental disabilities and their family members, guardians, advocates or authorized representatives, providers, and other appropriate individuals. (C) InformationInformation under subparagraph (A)(ii) shall be provided through—(i) toll-free telephone numbers; (ii) Internet websites; (iii) mailings; or (iv) such other means as the Governor may require. (d) Tools(1) In generalTo promote the use of valid and reliable screening tools for autism spectrum disorder and other developmental disabilities, the Secretary shall develop a curriculum for continuing education to assist individuals in recognizing the need for valid and reliable screening tools and the use of such tools. (2) Collection, storage, coordination, and availabilityThe Secretary, in collaboration with the Secretary of Education, shall provide for the collection, storage, coordination, and public availability of tools described in paragraph (1), educational materials and other products that are used by the Federal programs referred to in subsection (c)(1)(A), as well as—(A) programs authorized under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 [42 U.S.C. 15001 et seq.]; (B) early intervention programs or interagency coordinating councils authorized under part C of the Individuals with Disabilities Education Act [20 U.S.C. 1431 et seq.]; and (C) children with special health care needs programs authorized under title V of the Social Security Act [42 U.S.C. 701 et seq.]. (3) Required sharingIn establishing mechanisms and entities under this subsection, the Secretary, and the Secretary of Education, shall ensure the sharing of tools, materials, and products developed under this subsection among entities receiving funding under this section. (e) Diagnosis(1) TrainingThe Secretary, in coordination with activities conducted under title V of the Social Security Act [42 U.S.C. 701 et seq.], shall, subject to the availability of appropriations, expand, and strengthen the capacity of, existing interdisciplinary training opportunities or opportunities to increase the number of sites able to diagnose or rule out individuals with autism spectrum disorder or other developmental disabilities across their lifespan and ensure that—(A) competitive grants or cooperative agreements are awarded to public or nonprofit agencies, including institutions of higher education, to expand and strengthen the capacity of existing, or, in States that do not have such a program, develop new, maternal and child health interdisciplinary leadership education in neurodevelopmental and related disabilities programs (similar to the programs developed under section 501(a)(2) of the Social Security Act [42 U.S.C. 701(a)(2)]); (B) trainees under such training programs—(i) receive an appropriate balance of academic, clinical, and community opportunities; (ii) are culturally competent; (iii) are ethnically diverse; (iv) demonstrate a capacity to evaluate, diagnose or rule out, develop, and provide evidence-based interventions to individuals with autism spectrum disorder and other developmental disabilities across their lifespan; and (v) demonstrate an ability to use a family-centered approach, which may include collaborating with research centers or networks to provide training for providers of respite care (as defined in section 300ii of this title) or other providers, as applicable; and (C) program sites—(i) provide culturally and linguistically appropriate services; (ii) take a multidisciplinary approach and have experience working with underserved populations; and (iii) identify opportunities to partner with community-based organizations to expand the capacity of communities to serve individuals with autism spectrum disorder or other developmental disabilities. (2) Developmental-behavioral pediatrician training programs(A) In generalIn making awards under this subsection, the Secretary may prioritize awards to applicants that are developmental-behavioral pediatrician training programs located in rural or underserved areas. (B) Definition of underserved areaIn this paragraph, the term “underserved area” means—(i) a health professional shortage area (as defined in section 254e(a)(1)(A) of this title); and (ii) an urban or rural area designated by the Secretary as an area with a shortage of personal health services (as described in section 254b(b)(3)(A) of this title). (C) ReportNot later than 2 years after December 23, 2024, the Secretary shall submit to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate a report that examines the need for, and feasibility of, expanding the developmental-behavioral pediatrician training programs described in subparagraph (A). (3) Technical assistanceThe Secretary may award one or more grants under this section to provide technical assistance to the network of interdisciplinary training programs. (4) Best practicesThe Secretary shall promote research into additional valid and reliable tools for shortening the time required to confirm or rule out a diagnosis of autism spectrum disorder or other developmental disabilities and detecting individuals with autism spectrum disorder or other developmental disabilities at an earlier age. (f) InterventionThe Secretary shall promote research through grants or contracts, which may include grants or contracts to research centers or networks, to—(1) develop and evaluate evidence-based practices and interventions to improve outcomes for individuals with autism spectrum disorder or other developmental disabilities by addressing physical and behavioral health and communication needs of such individuals across the lifespan; (2) develop guidelines for such evidence-based practices and interventions; and (3) disseminate information related to such evidence-based practices and interventions and guidelines. (g) SunsetThis section shall not apply after September 30, 2029.

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