42 USC 280 - Interagency Autism Coordinating Committee

Collapse to view only § 280i-2. Interagency Autism Coordinating Committee

§ 280i. Developmental disabilities surveillance and research program
§ 280i-1. Autism education, early detection, and intervention
§ 280i-2. Interagency Autism Coordinating Committee
§ 280i-3. Reports to Congress
§ 280i-4. Authorization of appropriations

§ 280i. Developmental disabilities surveillance and research program

(a) Autism spectrum disorder and other developmental disabilities

(1) In general

(2) Data standards

(3) Eligibility

(b) Centers of excellence in autism spectrum disorder epidemiology

(1) In general

(2) Requirements

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:

(A) 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.

(B) 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.

(C) 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.

(d) Definitions

(1) Indian tribe; tribal organization

(2) Other developmental disabilities

(3) State

(e) Sunset

(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.)

§ 280i–1. Autism education, early detection, and intervention

(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 competent information and education on autism spectrum disorder and other developmental disabilities to increase public awareness of developmental milestones;

(2) promote research into the development and validation of reliable screening tools for individuals with autism spectrum disorder and other developmental disabilities and disseminate information regarding those screening tools;

(3) promote early screening of individuals at higher risk 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;

(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 higher risk for autism spectrum disorder and other developmental disabilities as early as practicable.

(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 competent 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 competent 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.

(i) toll-free telephone numbers;

(ii) Internet websites;

(iii) mailings; or

(iv) such other means as the Governor may require.

(d) Tools

(1) In general

(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 sharing

(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 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 existing or 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)]) in States that do not have such a program;

(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); and

(2) Developmental-behavioral pediatrician training programs

(A) In general

(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).

(3) Technical assistance

(4) Best practices

(f) Intervention

(g) Sunset

(July 1, 1944, ch. 373, title III, § 399BB, as added Pub. L. 109–416, § 3(a), Dec. 19, 2006, 120 Stat. 2823; amended Pub. L. 112–32, § 2(2), Sept. 30, 2011, 125 Stat. 361; Pub. L. 113–157, § 4, Aug. 8, 2014, 128 Stat. 1831; Pub. L. 116–60, § 3(b), Sept. 30, 2019, 133 Stat. 1111; Pub. L. 118–83, div. B, title II, § 201(b), Sept. 26, 2024, 138 Stat. 1537.)

§ 280i–2. Interagency Autism Coordinating Committee

(a) Establishment

(b) ResponsibilitiesIn carrying out its duties under this section, the Committee shall—

(1) monitor autism spectrum disorder research, and to the extent practicable services and support activities, across all relevant Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder;

(2) develop a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, interventions, including school and community-based interventions, and access to services and supports for individuals with autism spectrum disorder across the lifespan of such individuals;

(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including with 1

1 So in original. Probably should be preceded by “recommendations”.

respect to the strategic plan developed under paragraph (5);

(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions;

(5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports, for individuals with an autism spectrum disorder across the lifespan of such individuals and the families of such individuals, which shall include—

(A) proposed budgetary requirements; and

(B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; and

(6) submit to Congress and the President—

(A) an annual update on the summary of advances described in paragraph (2); and

(B) an annual update to the strategic plan described in paragraph (5), including any progress made in achieving the goals outlined in such strategic plan.

(1) Federal membershipThe Committee shall be composed of the following Federal members—

(A) the Director of the Centers for Disease Control and Prevention;

(B) the Director of the National Institutes of Health, and the Directors of such national research institutes of the National Institutes of Health as the Secretary determines appropriate;

(C) the heads of such other agencies as the Secretary determines appropriate, such as the Administration for Community Living, Administration for Children and Families, the Centers for Medicare & Medicaid Services, the Food and Drug Administration, and the Health Resources and Services Administration; and

(D) representatives of other Federal Governmental agencies that serve individuals with autism spectrum disorder such as the Department of Education, the Department of Labor, the Department of Justice, the Department of Veterans Affairs, the Department of Housing and Urban Development, and the Department of Defense.

(2) Non-Federal membersNot more than ½, but not fewer than ⅓, of the total membership of the Committee,2

2 So in original. The comma probably should not appear.

shall be composed of non-Federal public members to be appointed by the Secretary, of which—

(A) at least three such members shall be individuals with a diagnosis of autism spectrum disorder;

(B) at least three such members shall be parents or legal guardians of an individual with an autism spectrum disorder; and

(C) at least three such members shall be representatives of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.

(3) Period of appointment; vacancies

(A) Period of appointment for non-Federal members

(B) Vacancies

(d) Administrative support; terms of service; other provisionsThe following provisions shall apply with respect to the Committee:

(1) The Committee shall receive necessary and appropriate administrative support from the Secretary.

(2) The Committee shall meet at the call of the chairperson or upon the request of the Secretary. The Committee shall meet not fewer than 2 times each year.

(3) All meetings of the Committee shall be public and shall include appropriate time periods for questions and presentations by the public.

(e) Subcommittees; establishment and membership

(f) Sunset

(July 1, 1944, ch. 373, title III, § 399CC, as added Pub. L. 109–416, § 3(a), Dec. 19, 2006, 120 Stat. 2827; amended Pub. L. 112–32, § 2(3), Sept. 30, 2011, 125 Stat. 361; Pub. L. 113–157, § 5, Aug. 8, 2014, 128 Stat. 1832; Pub. L. 116–60, § 3(c), Sept. 30, 2019, 133 Stat. 1112; Pub. L. 118–83, div. B, title II, § 201(c), Sept. 26, 2024, 138 Stat. 1537.)

§ 280i–3. Reports to Congress

(a) Progress report

(1) In general

(2) ContentsThe report submitted under subsection (a) shall contain—

(A) a description of the progress made in implementing the provisions of the Autism CARES Act of 2019;

(B) a description of the amounts expended on the implementation of the amendments made by the Autism CARES Act of 2019;

(C) information on the incidence and prevalence of autism spectrum disorder, including available information on the prevalence of autism spectrum disorder among children and adults, and identification of any changes over time with respect to the incidence and prevalence of autism spectrum disorder;

(D) information on the average age of diagnosis for children with autism spectrum disorder and other disabilities, including how that age may have changed over the 4-year period beginning on September 30, 2019, and, as appropriate, how this age varies across population subgroups;

(E) information on the average age for intervention for individuals diagnosed with autism spectrum disorder and other developmental disabilities, including how that age may have changed over the 4-year period beginning on September 30, 2019, and, as appropriate, how this age varies across population subgroups;

(F) information on the average time between initial screening and then diagnosis or rule out for individuals with autism spectrum disorder or other developmental disabilities, as well as information on the average time between diagnosis and evidence-based intervention for individuals with autism spectrum disorder or other developmental disabilities and, as appropriate, on how such average time varies across population subgroups;

(G) information on the effectiveness and outcomes of interventions for individuals diagnosed with autism spectrum disorder, including by severity level as practicable, and other developmental disabilities and how the age of the individual or other factors, such as demographic characteristics, may affect such effectiveness;

(H) information on the effectiveness and outcomes of innovative and newly developed intervention strategies for individuals with autism spectrum disorder or other developmental disabilities;

(I) a description of the actions taken to implement and the progress made on implementation of the strategic plan developed by the Interagency Autism Coordinating Committee under section 280i–2(b) of this title; and

(J) information on how States use home- and community-based services and other supports to ensure that individuals with autism spectrum disorder and other developmental disabilities are living, working, and participating in their community.

(b) Report on the health and well-being of individuals with autism spectrum disorder across their lifespan

(1) In general

(2) ContentsThe report submitted under paragraph (1) shall contain—

(A) demographic factors associated with the health and well-being of individuals with autism spectrum disorder;

(B) an overview of policies and programs relevant to the health and well-being of individuals with autism spectrum disorder, including an identification of existing Federal laws, regulations, policies, research, and programs;

(C) recommendations on establishing best practices guidelines to ensure interdisciplinary coordination between all relevant service providers receiving Federal funding;

(D) comprehensive approaches to improving health outcomes and well-being for individuals with autism spectrum disorder, including—

(i) community-based behavioral supports and interventions;

(ii) nutrition, recreational, and social activities; and

(iii) personal safety services related to public safety agencies or the criminal justice system for such individuals; and

(E) recommendations that seek to improve health outcomes for such individuals, including across their lifespan, by addressing—

(i) screening and diagnosis of children and adults;

(ii) behavioral and other therapeutic approaches;

(iii) primary and preventative care;

(iv) communication challenges;

(v) aggression, self-injury, elopement, and other behavioral issues;

(vi) emergency room visits and acute care hospitalization;

(vii) treatment for co-occurring physical and mental health conditions;

(viii) premature mortality;

(ix) medical practitioner training; and

(x) caregiver mental health.

(July 1, 1944, ch. 373, title III, § 399DD, as added Pub. L. 109–416, § 3(a), Dec. 19, 2006, 120 Stat. 2828; amended Pub. L. 112–32, § 2(4), Sept. 30, 2011, 125 Stat. 361; Pub. L. 113–157, § 6, Aug. 8, 2014, 128 Stat. 1834; Pub. L. 116–60, § 3(d), Sept. 30, 2019, 133 Stat. 1113.)

§ 280i–4. Authorization of appropriations

(a) Developmental disabilities surveillance and research program

(b) Autism education, early detection, and intervention

(July 1, 1944, ch. 373, title III, § 399EE, as added Pub. L. 109–416, § 4(a), Dec. 19, 2006, 120 Stat. 2829; amended Pub. L. 112–32, § 3, Sept. 30, 2011, 125 Stat. 361; Pub. L. 113–157, § 7, Aug. 8, 2014, 128 Stat. 1836; Pub. L. 114–255, div. A, title II, § 2042(f)(2), Dec. 13, 2016, 130 Stat. 1073; Pub. L. 116–60, § 3(e), Sept. 30, 2019, 133 Stat. 1114.)