| 1 | 1 | | II |
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| 2 | 2 | | 119THCONGRESS |
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| 3 | 3 | | 1 |
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| 4 | 4 | | STSESSION S. 139 |
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| 5 | 5 | | To amend the Public Health Service Act to reauthorize and extend the |
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| 6 | 6 | | Fetal Alcohol Spectrum Disorders Prevention and Services program, and |
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| 7 | 7 | | for other purposes. |
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| 8 | 8 | | IN THE SENATE OF THE UNITED STATES |
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| 9 | 9 | | JANUARY16, 2025 |
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| 10 | 10 | | Ms. M |
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| 11 | 11 | | URKOWSKI(for herself, Ms. KLOBUCHAR, Mr. KING, Ms. HIRONO, Mr. |
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| 12 | 12 | | M |
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| 13 | 13 | | ORAN, Ms. BALDWIN, Ms. CANTWELL, and Mr. CRAMER) introduced |
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| 14 | 14 | | the following bill; which was read twice and referred to the Committee |
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| 15 | 15 | | on Health, Education, Labor, and Pensions |
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| 16 | 16 | | A BILL |
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| 17 | 17 | | To amend the Public Health Service Act to reauthorize and |
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| 18 | 18 | | extend the Fetal Alcohol Spectrum Disorders Prevention |
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| 19 | 19 | | and Services program, and for other purposes. |
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| 20 | 20 | | Be it enacted by the Senate and House of Representa-1 |
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| 21 | 21 | | tives of the United States of America in Congress assembled, 2 |
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| 22 | 22 | | SECTION 1. SHORT TITLE. 3 |
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| 23 | 23 | | This Act may be cited as the ‘‘Advancing FASD Re-4 |
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| 24 | 24 | | search, Services and Prevention Act’’ or the ‘‘FASD Re-5 |
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| 25 | 25 | | spect Act’’. 6 |
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| 28 | 28 | | •S 139 IS |
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| 29 | 29 | | SEC. 2. SUPPORT FOR INDIVIDUALS AND FAMILIES IM-1 |
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| 30 | 30 | | PACTED BY FETAL ALCOHOL SPECTRUM DIS-2 |
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| 31 | 31 | | ORDER. 3 |
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| 32 | 32 | | (a) I |
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| 33 | 33 | | NGENERAL.—Part O of title III of the Public 4 |
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| 34 | 34 | | Health Service Act (42 U.S.C. 280f et seq.) is amended— 5 |
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| 35 | 35 | | (1) by amending the part heading to read as 6 |
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| 36 | 36 | | follows: ‘‘ |
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| 37 | 37 | | FETAL ALCOHOL SPECTRUM DIS -7 |
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| 38 | 38 | | ORDERS PREVENTION AND SERVICES PRO -8 |
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| 39 | 39 | | GRAM’’; 9 |
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| 40 | 40 | | (2) in section 399H (42 U.S.C. 280f)— 10 |
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| 41 | 41 | | (A) in the section heading, by striking 11 |
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| 42 | 42 | | ‘‘ |
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| 43 | 43 | | ESTABLISHMENT OF FETAL ALCOHOL 12 |
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| 44 | 44 | | SYNDROME PREVENTION ’’ and inserting 13 |
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| 45 | 45 | | ‘‘ |
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| 46 | 46 | | FETAL ALCOHOL SPECTRUM DISORDERS 14 |
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| 47 | 47 | | PREVENTION , INTERVENTION ,’’; 15 |
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| 48 | 48 | | (B) by striking ‘‘Fetal Alcohol Syndrome 16 |
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| 49 | 49 | | and Fetal Alcohol Effect’’ each place it appears 17 |
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| 50 | 50 | | and inserting ‘‘FASD’’; 18 |
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| 51 | 51 | | (C) in subsection (a)— 19 |
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| 52 | 52 | | (i) by amending the heading to read 20 |
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| 53 | 53 | | as follows: ‘‘I |
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| 54 | 54 | | NGENERAL’’; 21 |
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| 55 | 55 | | (ii) in the matter preceding paragraph 22 |
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| 56 | 56 | | (1)— 23 |
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| 57 | 57 | | (I) by inserting ‘‘or continue ac-24 |
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| 58 | 58 | | tivities to support’’ after ‘‘shall estab-25 |
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| 59 | 59 | | lish’’; 26 |
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| 62 | 62 | | •S 139 IS |
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| 63 | 63 | | (II) by striking ‘‘FASD’’ (as 1 |
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| 64 | 64 | | amended by subparagraph (B)) and 2 |
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| 65 | 65 | | inserting ‘‘fetal alcohol spectrum dis-3 |
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| 66 | 66 | | orders (referred to in this section as 4 |
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| 67 | 67 | | ‘FASD’)’’; 5 |
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| 68 | 68 | | (III) by striking ‘‘prevention, 6 |
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| 69 | 69 | | intervention’’ and inserting ‘‘aware-7 |
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| 70 | 70 | | ness, prevention, identification, inter-8 |
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| 71 | 71 | | vention,’’; and 9 |
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| 72 | 72 | | (IV) by striking ‘‘that shall’’ and 10 |
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| 73 | 73 | | inserting ‘‘, which may’’; 11 |
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| 74 | 74 | | (iii) in paragraph (1)— 12 |
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| 75 | 75 | | (I) in subparagraph (A)— 13 |
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| 76 | 76 | | (aa) by striking ‘‘medical 14 |
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| 77 | 77 | | schools’’ and inserting ‘‘health 15 |
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| 78 | 78 | | professions schools’’; and 16 |
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| 79 | 79 | | (bb) by inserting ‘‘infants,’’ 17 |
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| 80 | 80 | | after ‘‘provision of services for’’; 18 |
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| 81 | 81 | | and 19 |
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| 82 | 82 | | (II) in subparagraph (D), by 20 |
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| 83 | 83 | | striking ‘‘medical and mental’’ and in-21 |
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| 84 | 84 | | serting ‘‘agencies providing’’; 22 |
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| 85 | 85 | | (iv) in paragraph (2)— 23 |
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| 86 | 86 | | (I) in the matter preceding sub-24 |
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| 87 | 87 | | paragraph (A), by striking ‘‘a preven-25 |
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| 90 | 90 | | •S 139 IS |
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| 91 | 91 | | tion and diagnosis program to support 1 |
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| 92 | 92 | | clinical studies, demonstrations and 2 |
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| 93 | 93 | | other research as appropriate’’ and in-3 |
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| 94 | 94 | | serting ‘‘supporting and conducting 4 |
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| 95 | 95 | | research on FASD, as appropriate, in-5 |
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| 96 | 96 | | cluding’’; 6 |
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| 97 | 97 | | (II) in subparagraph (B)— 7 |
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| 98 | 98 | | (aa) by striking ‘‘prevention 8 |
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| 99 | 99 | | services and interventions for 9 |
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| 100 | 100 | | pregnant, alcohol-dependent 10 |
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| 101 | 101 | | women’’ and inserting ‘‘culturally 11 |
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| 102 | 102 | | and linguistically appropriate evi-12 |
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| 103 | 103 | | dence-based or evidence-informed 13 |
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| 104 | 104 | | interventions and appropriate so-14 |
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| 105 | 105 | | cietal supports for preventing 15 |
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| 106 | 106 | | prenatal alcohol exposure, which 16 |
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| 107 | 107 | | may co-occur with exposure to 17 |
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| 108 | 108 | | other substances’’; and 18 |
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| 109 | 109 | | (bb) by striking ‘‘; and’’ and 19 |
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| 110 | 110 | | inserting a semicolon; 20 |
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| 111 | 111 | | (v) by striking paragraph (3) and in-21 |
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| 112 | 112 | | serting the following: 22 |
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| 113 | 113 | | ‘‘(3) integrating into surveillance a case defini-23 |
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| 114 | 114 | | tion for FASD and, in collaboration with other Fed-24 |
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| 115 | 115 | | eral and outside partners, supporting organizations 25 |
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| 118 | 118 | | •S 139 IS |
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| 119 | 119 | | of appropriate medical and mental health profes-1 |
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| 120 | 120 | | sionals in their development and refinement of evi-2 |
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| 121 | 121 | | dence-based clinical diagnostic guidelines and cri-3 |
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| 122 | 122 | | teria for all FASD; and 4 |
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| 123 | 123 | | ‘‘(4) building State and Tribal capacity for the 5 |
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| 124 | 124 | | identification, treatment, and support of individuals 6 |
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| 125 | 125 | | with FASD and their families, which may include— 7 |
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| 126 | 126 | | ‘‘(A) utilizing and adapting existing Fed-8 |
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| 127 | 127 | | eral, State, or Tribal programs to include 9 |
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| 128 | 128 | | FASD identification and FASD-informed sup-10 |
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| 129 | 129 | | port; 11 |
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| 130 | 130 | | ‘‘(B) developing and expanding screening 12 |
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| 131 | 131 | | and diagnostic capacity for FASD; 13 |
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| 132 | 132 | | ‘‘(C) developing, implementing, and evalu-14 |
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| 133 | 133 | | ating targeted FASD-informed intervention 15 |
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| 134 | 134 | | programs for FASD; 16 |
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| 135 | 135 | | ‘‘(D) increasing awareness of FASD; 17 |
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| 136 | 136 | | ‘‘(E) providing training with respect to 18 |
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| 137 | 137 | | FASD for professionals across relevant sectors; 19 |
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| 138 | 138 | | and 20 |
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| 139 | 139 | | ‘‘(F) disseminating information about 21 |
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| 140 | 140 | | FASD and support services to affected individ-22 |
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| 141 | 141 | | uals and their families.’’; 23 |
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| 142 | 142 | | (D) in subsection (b)— 24 |
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| 145 | 145 | | •S 139 IS |
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| 146 | 146 | | (i) by striking ‘‘described in section 1 |
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| 147 | 147 | | 399I’’; 2 |
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| 148 | 148 | | (ii) by striking ‘‘The Secretary’’ and 3 |
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| 149 | 149 | | inserting the following: 4 |
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| 150 | 150 | | ‘‘(1) I |
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| 151 | 151 | | N GENERAL.—The Secretary’’; and 5 |
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| 152 | 152 | | (iii) by adding at the end the fol-6 |
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| 153 | 153 | | lowing: 7 |
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| 154 | 154 | | ‘‘(2) E |
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| 155 | 155 | | LIGIBLE ENTITIES.—To be eligible to re-8 |
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| 156 | 156 | | ceive a grant, or enter into a cooperative agreement 9 |
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| 157 | 157 | | or contract, under this section, an entity shall— 10 |
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| 158 | 158 | | ‘‘(A) be a State, Indian Tribe or Tribal or-11 |
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| 159 | 159 | | ganization, local government, scientific or aca-12 |
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| 160 | 160 | | demic institution, or nonprofit organization; 13 |
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| 161 | 161 | | and 14 |
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| 162 | 162 | | ‘‘(B) prepare and submit to the Secretary 15 |
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| 163 | 163 | | an application at such time, in such manner, 16 |
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| 164 | 164 | | and containing such information as the Sec-17 |
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| 165 | 165 | | retary may require, including a description of 18 |
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| 166 | 166 | | the activities that the entity intends to carry 19 |
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| 167 | 167 | | out using amounts received under this section. 20 |
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| 168 | 168 | | ‘‘(3) A |
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| 169 | 169 | | DDITIONAL APPLICATION CONTENTS .— 21 |
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| 170 | 170 | | The Secretary may require that an eligible entity in-22 |
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| 171 | 171 | | clude in the application submitted under paragraph 23 |
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| 172 | 172 | | (2)(B)— 24 |
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| 175 | 175 | | •S 139 IS |
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| 176 | 176 | | ‘‘(A) a designation of an individual to 1 |
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| 177 | 177 | | serve as a FASD State or Tribal coordinator of 2 |
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| 178 | 178 | | activities such eligible entity proposes to carry 3 |
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| 179 | 179 | | out through a grant, cooperative agreement, or 4 |
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| 180 | 180 | | contract under this section; and 5 |
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| 181 | 181 | | ‘‘(B) a description of an advisory com-6 |
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| 182 | 182 | | mittee the entity will establish to provide guid-7 |
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| 183 | 183 | | ance for the entity on developing and imple-8 |
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| 184 | 184 | | menting a statewide or Tribal strategic plan to 9 |
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| 185 | 185 | | prevent FASD and provide for the identifica-10 |
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| 186 | 186 | | tion, treatment, and support of individuals with 11 |
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| 187 | 187 | | FASD and their families.’’; and 12 |
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| 188 | 188 | | (E) by striking subsections (c) and (d); 13 |
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| 189 | 189 | | and 14 |
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| 190 | 190 | | (F) by adding at the end the following: 15 |
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| 191 | 191 | | ‘‘(c) D |
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| 192 | 192 | | EFINITION OFFASD-INFORMED.—For pur-16 |
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| 193 | 193 | | poses of this section, the term ‘FASD-informed’, with re-17 |
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| 194 | 194 | | spect to support or an intervention program, means that 18 |
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| 195 | 195 | | such support or intervention program uses culturally and 19 |
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| 196 | 196 | | linguistically informed evidence-based or practice-based 20 |
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| 197 | 197 | | interventions and appropriate societal supports to support 21 |
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| 198 | 198 | | an improved quality of life for an individual with FASD 22 |
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| 199 | 199 | | and the family of such individual.’’; and 23 |
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| 202 | 202 | | •S 139 IS |
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| 203 | 203 | | (3) by striking sections 399I, 399J, and 399K 1 |
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| 204 | 204 | | (42 U.S.C. 280f–1, 280f–2, 280f–3) and inserting 2 |
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| 205 | 205 | | the following: 3 |
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| 206 | 206 | | ‘‘SEC. 399I. FETAL ALCOHOL SPECTRUM DISORDERS CEN-4 |
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| 207 | 207 | | TERS FOR EXCELLENCE. 5 |
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| 208 | 208 | | ‘‘(a) I |
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| 209 | 209 | | NGENERAL.—The Secretary shall, as appro-6 |
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| 210 | 210 | | priate, award grants, cooperative agreements, or contracts 7 |
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| 211 | 211 | | to public or nonprofit private entities with demonstrated 8 |
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| 212 | 212 | | expertise in the prevention of, identification of, and inter-9 |
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| 213 | 213 | | vention services with respect to, fetal alcohol spectrum dis-10 |
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| 214 | 214 | | orders (referred to in this section as ‘FASD’) and other 11 |
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| 215 | 215 | | related adverse conditions. Such awards shall be for the 12 |
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| 216 | 216 | | purposes of establishing Fetal Alcohol Spectrum Disorders 13 |
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| 217 | 217 | | Centers for Excellence to build local, Tribal, State, and 14 |
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| 218 | 218 | | nationwide capacities to prevent the occurrence of FASD 15 |
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| 219 | 219 | | and other related adverse conditions, and to respond to 16 |
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| 220 | 220 | | the needs of individuals with FASD and their families by 17 |
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| 221 | 221 | | carrying out the programs described in subsection (b). 18 |
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| 222 | 222 | | ‘‘(b) P |
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| 223 | 223 | | ROGRAMS.—An entity receiving an award 19 |
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| 224 | 224 | | under subsection (a) may use such award for the following 20 |
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| 225 | 225 | | purposes: 21 |
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| 226 | 226 | | ‘‘(1) Initiating or expanding diagnostic capacity 22 |
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| 227 | 227 | | for FASD by increasing screening, assessment, iden-23 |
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| 228 | 228 | | tification, and diagnosis. 24 |
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| 231 | 231 | | •S 139 IS |
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| 232 | 232 | | ‘‘(2) Developing and supporting public aware-1 |
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| 233 | 233 | | ness and outreach activities, including the use of a 2 |
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| 234 | 234 | | range of media and public outreach, to raise public 3 |
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| 235 | 235 | | awareness of the risks associated with alcohol con-4 |
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| 236 | 236 | | sumption during pregnancy, with the goals of reduc-5 |
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| 237 | 237 | | ing the prevalence of FASD and improving the de-6 |
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| 238 | 238 | | velopmental, health (including mental health), and 7 |
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| 239 | 239 | | educational outcomes of individuals with FASD and 8 |
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| 240 | 240 | | supporting families caring for individuals with 9 |
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| 241 | 241 | | FASD. 10 |
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| 242 | 242 | | ‘‘(3) Acting as a clearinghouse for evidence- 11 |
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| 243 | 243 | | based resources on FASD prevention, identification, 12 |
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| 244 | 244 | | and culturally and linguistically appropriate best 13 |
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| 245 | 245 | | practices, including the maintenance of a national 14 |
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| 246 | 246 | | data-based directory on FASD-specific services in 15 |
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| 247 | 247 | | States, Indian Tribes, and local communities, and 16 |
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| 248 | 248 | | disseminating ongoing research and developing re-17 |
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| 249 | 249 | | sources on FASD to help inform systems of care for 18 |
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| 250 | 250 | | individuals with FASD across their lifespan. 19 |
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| 251 | 251 | | ‘‘(4) Increasing awareness and understanding 20 |
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| 252 | 252 | | of efficacious, evidence-based screening tools and 21 |
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| 253 | 253 | | culturally and linguistically appropriate evidence- 22 |
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| 254 | 254 | | based intervention services and best practices, which 23 |
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| 255 | 255 | | may include by conducting nationwide, regional, 24 |
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| 256 | 256 | | State, Tribal, or peer cross-State webinars, work-25 |
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| 259 | 259 | | •S 139 IS |
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| 260 | 260 | | shops, or conferences for training community lead-1 |
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| 261 | 261 | | ers, medical and mental health and substance use 2 |
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| 262 | 262 | | disorder professionals, education and disability pro-3 |
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| 263 | 263 | | fessionals, families, law enforcement personnel, 4 |
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| 264 | 264 | | judges, individuals working in financial assistance 5 |
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| 265 | 265 | | programs, social service personnel, child welfare pro-6 |
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| 266 | 266 | | fessionals, and other service providers. 7 |
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| 267 | 267 | | ‘‘(5) Improving capacity for State, Tribal, and 8 |
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| 268 | 268 | | local affiliates dedicated to FASD awareness, pre-9 |
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| 269 | 269 | | vention, and identification and family and individual 10 |
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| 270 | 270 | | support programs and services. 11 |
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| 271 | 271 | | ‘‘(6) Providing technical assistance to recipients 12 |
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| 272 | 272 | | of grants, cooperative agreements, or contracts 13 |
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| 273 | 273 | | under section 399H, as appropriate. 14 |
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| 274 | 274 | | ‘‘(7) Carrying out other functions, as appro-15 |
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| 275 | 275 | | priate. 16 |
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| 276 | 276 | | ‘‘(c) A |
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| 277 | 277 | | PPLICATION.—To be eligible for a grant, con-17 |
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| 278 | 278 | | tract, or cooperative agreement under this section, an enti-18 |
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| 279 | 279 | | ty shall submit to the Secretary an application at such 19 |
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| 280 | 280 | | time, in such manner, and containing such information as 20 |
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| 281 | 281 | | the Secretary may require. 21 |
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| 282 | 282 | | ‘‘(d) S |
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| 283 | 283 | | UBCONTRACTING.—A public or private non-22 |
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| 284 | 284 | | profit entity may carry out the following activities required 23 |
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| 285 | 285 | | under this section through contracts or cooperative agree-24 |
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| 288 | 288 | | •S 139 IS |
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| 289 | 289 | | ments with other public and private nonprofit entities with 1 |
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| 290 | 290 | | demonstrated expertise in FASD: 2 |
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| 291 | 291 | | ‘‘(1) Prevention activities. 3 |
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| 292 | 292 | | ‘‘(2) Screening and identification. 4 |
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| 293 | 293 | | ‘‘(3) Resource development and dissemination, 5 |
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| 294 | 294 | | training and technical assistance, administration, 6 |
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| 295 | 295 | | and support of FASD partner networks. 7 |
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| 296 | 296 | | ‘‘(4) Intervention and treatment services. 8 |
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| 297 | 297 | | ‘‘SEC. 399J. AUTHORIZATION OF APPROPRIATIONS. 9 |
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| 298 | 298 | | ‘‘There are authorized to be appropriated to carry out 10 |
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| 299 | 299 | | this part such sums as may be necessary for each of fiscal 11 |
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| 300 | 300 | | years 2025 through 2029.’’. 12 |
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| 301 | 301 | | (b) R |
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| 302 | 302 | | EPORT.—Not later than 4 years after the date 13 |
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| 303 | 303 | | of enactment of this Act, the Secretary of Health and 14 |
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| 304 | 304 | | Human Services shall submit to the Committee on Health, 15 |
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| 305 | 305 | | Education, Labor, and Pensions of the Senate and the 16 |
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| 306 | 306 | | Committee on Energy and Commerce of the House of 17 |
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| 307 | 307 | | Representatives a report on the efforts of the Department 18 |
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| 308 | 308 | | of Health and Human Services to advance public aware-19 |
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| 309 | 309 | | ness of, and facilitate the identification of best practices 20 |
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| 310 | 310 | | related to, fetal alcohol spectrum disorders identification, 21 |
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| 311 | 311 | | prevention, treatment, and support. 22 |
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| 315 | 315 | | (c) TECHNICALAMENDMENT.—Section 519D of the 1 |
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| 316 | 316 | | Public Health Service Act (42 U.S.C. 290bb–25d) is re-2 |
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| 317 | 317 | | pealed. 3 |
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| 318 | 318 | | Æ |
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