Overview
Title
To amend the Public Health Service Act to reauthorize programs and research relating to autism, and for other purposes.
ELI5 AI
The bill wants to keep giving money to programs that help people with autism until 2029. It also tries to make sure the programs are kind and helpful to everyone, and it wants to be better at helping kids with autism as they grow up.
Summary AI
The bill S. 4762 aims to amend the Public Health Service Act to continue funding and support for autism-related programs and research until 2029. It includes updates to existing language, such as making references more culturally and linguistically sensitive, enhancing autism education and intervention programs, and expanding the role of developmental-behavioral pediatricians. The bill also mandates new reports to Congress on autism-related issues and authorizes increased funding for autism research and services. Additionally, it allows the Secretary of Health and Human Services to provide technical assistance to improve communication tools for individuals with autism.
Published
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AnalysisAI
Summary of the Bill
The legislation seeks to amend the Public Health Service Act to enhance and extend various programs and research efforts related to autism, with its latest iteration titled the “Autism Collaboration, Accountability, Research, Education, and Support Act of 2024” or the “Autism CARES Act of 2024.” Key aspects of the bill involve updating language for clarity and cultural sensitivity, increasing funding for programs over the next few years, and expanding the scope of autism-related research. The bill also emphasizes community engagement and requires periodic reports to Congress on progress and challenges faced by individuals with autism, especially in transitioning from school-based services to adulthood.
Significant Issues
One of the primary concerns with the bill is the significant increase in appropriations without accompanying justification or detailed cost-benefit analysis, which could lead to questions about potential wasteful spending. Additionally, changes to language, such as the adoption of terms like “culturally and linguistically appropriate,” lack specific definitions, posing challenges in ensuring consistent implementation.
Another issue is the transition report for young adults with autism, which lacks clarity on metrics or criteria, potentially rendering it ineffective for guiding actionable outcomes. Furthermore, the process for submitting budget estimates bypassing typical internal reviews could lead to insufficient stakeholder engagement.
The expanded research fields, such as gerontology and developmental behavioral pediatrics, come without clear funding guidelines, raising concerns about budget management. There is also vagueness around criteria for technical assistance, potentially causing inefficiencies in resource allocation.
Impact on the Public and Stakeholders
In the broadest context, the bill aims to improve the lives of individuals with autism by expanding resources and research, potentially leading to enhanced interventions and support services. The funding increase implies a commitment to addressing gaps in services and improving outcomes for those with autism. If implemented efficiently, families could see better support and more effective educational and healthcare services for autistic individuals.
On the negative side, the absence of precise definitions and performance metrics poses a risk of inconsistent application across services, which could dilute the intended benefits. If funds are not managed effectively due to lack of oversight or specific guidance, there might be limited improvement in services relative to the expenditure.
For stakeholders such as educational institutions, healthcare providers, and advocacy organizations, the bill's increased funding and broadened scope of research are positive steps. They may benefit from enhanced training programs and resources. However, providers might face challenges in aligning with vague standards and reporting requirements, leading to potential administrative burdens.
In summary, the bill holds the promise of significant improvements in autism care and research but needs refined guidelines and oversight mechanisms to ensure its provisions translate into tangible benefits for individuals with autism and their families.
Financial Assessment
The bill introduces several financial updates and appropriations aimed at supporting autism-related programs through amendments to the Public Health Service Act. Key financial elements include the reauthorization of funds for existing programs, the increase in appropriations for autism-related research, and provisions for additional technical assistance.
Financial Allocations and Appropriations
The bill makes adjustments to existing appropriations by amending Section 399EE of the Public Health Service Act. It specifically proposes to increase funding in several ways:
Subsection (a) updates the authorized appropriations from $23,100,000 for each of fiscal years 2020 through 2024 to $28,100,000 for each of fiscal years 2025 through 2029.
Subsection (b) increases appropriations from $50,599,000 for each of fiscal years 2020 through 2024 to $56,344,000 for each of fiscal years 2025 through 2029.
Subsection (c) raises the funds allocated from $296,000,000 for each of fiscal years 2020 through 2024 to $306,000,000 for each of fiscal years 2025 through 2029.
Relation to Identified Issues
Increased Appropriations Without Clear Justification
One of the main concerns highlighted in the issues section is the significant increase in appropriations without providing clear justification or a cost-benefit analysis. This lack of clarity could potentially lead to questions about whether the increased funding will lead to efficient and effective outcomes or if it might result in wasteful spending.
Undefined Criteria and Oversight
The bill frequently refers to "evidence-based services, tools, and technologies," but it lacks specific criteria for what qualifies as evidence-based. This absence of precise definitions can lead to inefficiencies or inconsistencies in financial spending. Moreover, the bill does not clearly define oversight mechanisms to ensure that the increased budget is used efficiently, which poses risks of unmonitored financial administration.
Potential Redundancies
The requirement for multiple committee reports on technical assistance could create redundancies. Without the specific roles and responsibilities of each committee clearly delineated, there could be overlapping efforts that may not justify the financial resources devoted to preparing and compiling these reports.
Budget Estimation Process
The process of submitting the NIH's budget estimates directly to the President, bypassing usual review processes that involve multiple stakeholders, may create concerns regarding the thoroughness and comprehensiveness of budgetary scrutiny. This could affect how financial resources are assessed and allocated, possibly leading to unbalanced distribution across different research needs noted in the bill.
Conclusion
The bill seeks to enhance funding and support for autism-related initiatives through increased appropriations and program expansions. However, the financial provisions in the bill raise important questions about the oversight, clarity, and justification of increased spending. These are critical considerations that need addressing to ensure that the proposed financial allocations translate into tangible benefits for individuals with autism spectrum disorder and related developmental disabilities.
Issues
The bill significantly increases appropriations in Section 399EE without providing clear justification for the increased amounts or a cost-benefit analysis, which could be perceived as leading to potential wasteful spending (Section 2).
The term 'culturally and linguistically appropriate' is used in Section 399BB but is not specifically defined, leading to potentially varied interpretations and inconsistencies in implementation (Section 2).
The transition report in Section 399DD does not provide specific metrics or success criteria for young adults transitioning from school-based services to adulthood services, which could result in a report lacking actionable insight (Section 2).
The budget estimate for NIH initiatives is submitted directly to the President rather than going through usual internal review processes, possibly undermining a thorough analysis involving multiple stakeholders (Section 3).
The lack of specified funding limits or oversight mechanisms for new initiatives and expanded fields in autism research, such as those involving gerontology and behavioral pediatrics, could lead to budget increases without clear guidelines or justification (Section 3).
The criteria for determining 'evidence-based services, tools, and technologies' in providing technical assistance are not specified, which may lead to inefficiencies or inconsistencies in spending (Section 4).
The reporting requirement across multiple committees for technical assistance provision might result in redundancy and inefficiency unless the specific roles and responsibilities of each committee are clearly delineated (Section 4).
The inclusion of specified fields like psychiatry and psychology in Section 409C without consideration of other relevant fields may raise concerns of favoritism or lack of a comprehensive interdisciplinary approach (Section 3).
Sections
Sections are presented as they are annotated in the original legislative text. Any missing headers, numbers, or non-consecutive order is due to the original text.
1. Short title Read Opens in new tab
Summary AI
The section states that the name of the law is the "Autism Collaboration, Accountability, Research, Education, and Support Act of 2024," also known as the "Autism CARES Act of 2024."
2. Programs relating to autism Read Opens in new tab
Summary AI
The text outlines several amendments to the Public Health Service Act concerning autism-related programs. It includes changes to terms and dates, funding increases for future years, and additional reporting requirements, including a focus on young adults transitioning from school-based services to adulthood.
Money References
- (a) Developmental disabilities surveillance and research program.—Section 399AA of the Public Health Service Act (42 U.S.C. 280i) is amended— (1) in subsection (a)(3), by striking “tribe, or a tribal” and inserting “Tribe, or a Tribal”; (2) in subsection (d)(1)— (A) in the paragraph heading, by striking “tribe; tribal” and inserting “Tribe; Tribal”; (B) by striking “tribe” and inserting “Tribe”; and (C) by striking “tribal” and inserting “Tribal”; and (3) in subsection (e), by striking “2024” and inserting “2029”. (b) Autism education, early detection, and intervention.—Section 399BB of the Public Health Service Act (42 U.S.C. 280i–1) is amended— (1) in subsections (b)(1) and (c), by striking “culturally competent” each place it appears and inserting “culturally and linguistically appropriate”; (2) in subsection (b)— (A) in paragraph (2), by striking “screening” each place it appears and inserting “screening and diagnostic”; (B) in paragraph (3), by striking “higher risk” and inserting “increased likelihood”; and (C) in paragraph (7), by striking “higher risk” and inserting “increased likelihood”; (3) in subsection (e)(2), by adding at the end the following: “(C) REPORT.—Not later than 2 years after the date of enactment of the Autism CARES Act of 2024, the Secretary shall 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 that examines the need for developmental-behavioral pediatricians and the feasibility of expanding the developmental-behavioral pediatrician training programs described in subparagraph (A).”; (4) by amending subsection (f) to read as follows: “(f) Intervention.—The 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 interventions; and “(3) disseminate information related to such evidence-based practices and interventions and guidelines.”; and (5) in subsection (g), by striking “2024” and inserting “2029”. (c) Interagency autism coordinating committee.—Section 399CC of the Public Health Service Act (42 U.S.C. 280i–2) is amended— (1) in subsection (b)— (A) in paragraph (2), by striking “develop a summary of” and inserting “summarize, on an annual basis,”; (B) in paragraph (5)(A), by striking “proposed budgetary requirements” and inserting “a professional judgment of anticipated budgetary needs”; and (C) in paragraph (6)(B), by striking “an annual” and inserting “a biennial”; and (2) in subsection (f), by striking “2024” and inserting “2029”. (d) Reports to Congress.—Section 399DD of the Public Health Service Act (42 U.S.C. 280i–3) is amended— (1) by striking “2019” each place it appears and inserting “2024”; (2) in subsection (a)(1)— (A) in the paragraph heading, by striking “In General” and inserting “In general”; (B) by striking “Health, Education, Labor, and Pensions Committee of the Senate and the Energy and Commerce Committee” and inserting “Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce”; and (C) by striking “Internet Web site” and inserting “website”; and (3) by adding at the end the following: “(c) Update on young adults and youth transitioning to adulthood.—Not later than 2 years after the date of enactment of the Autism CARES Act of 2024, the Secretary, in coordination with other Federal departments and agencies that serve individuals with autism spectrum disorder, shall 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 an update to the report required pursuant to subsection (b) of this section, as added by section 6 of the Autism CARES Act of 2014 and in effect before the date of enactment of the Autism CARES Act of 2019, concerning young adults with autism spectrum disorder and the challenges related to the transition from existing school-based services to services available during adulthood.”. (e) Authorization of appropriations.—Section 399EE of the Public Health Service Act (42 U.S.C. 280i–4) is amended— (1) in subsection (a), by striking “$23,100,000 for each of fiscal years 2020 through 2024” and inserting “$28,100,000 for each of fiscal years 2025 through 2029”; (2) in subsection (b), by striking “$50,599,000 for each of fiscal years 2020 through 2024” and inserting “$56,344,000 for each of fiscal years 2025 through 2029”; and (3) in subsection (c), by striking “$296,000,000 for each of fiscal years 2020 through 2024” and inserting “$306,000,000 for each of fiscal years 2025 through 2029”. ---
3. Expansion, intensification, and coordination of activities of National Institutes of Health with respect to research on autism spectrum disorder Read Opens in new tab
Summary AI
The amendment to Section 409C of the Public Health Service Act enhances the research on autism spectrum disorder at the National Institutes of Health by expanding the fields involved, such as psychiatry and gerontology, and emphasizes that the Director should consider the diverse needs of individuals with autism, including co-occurring conditions, when planning these activities.
4. Technical assistance to improve access to communication tools Read Opens in new tab
Summary AI
The Secretary of Health and Human Services is allowed to provide training and help to states, tribes, and other regions to use federal funds to support communication for people with autism and developmental disabilities. Each year, the Secretary must report to certain congressional committees about the assistance provided and any progress made in developing these communication tools and services.
1. Short title Read Opens in new tab
Summary AI
The first section of the bill states that it can be officially called the "Autism Collaboration, Accountability, Research, Education, and Support Act of 2024" or simply the "Autism CARES Act of 2024".
2. Programs relating to autism Read Opens in new tab
Summary AI
The amendments to the Public Health Service Act focus on enhancing programs for autism by updating language for clarity and sensitivity, extending authorization timelines, increasing funding for fiscal years 2025 to 2029, and emphasizing stronger community and cultural support. Additionally, they require the submission of timely reports to Congress and promote research on evidence-based interventions to help individuals with autism and other developmental disabilities.
Money References
- (c) Interagency autism coordinating committee.—Section 399CC of the Public Health Service Act (42 U.S.C. 280i–2) is amended— (1) in subsection (b)— (A) in paragraph (2), by striking “develop a summary of” and inserting “summarize, on an annual basis,”; and (B) in paragraph (6)(B), by striking “an annual update to” and inserting “a biennial update on”; and (2) in subsection (f), by striking “2024” and inserting “2029”. (d) Reports to Congress.—Section 399DD of the Public Health Service Act (42 U.S.C. 280i–3) is amended— (1) by striking “2019” each place it appears and inserting “2024”; (2) in subsection (a)(1)— (A) in the paragraph heading, by striking “In General” and inserting “In general”; (B) by striking “Health, Education, Labor, and Pensions Committee of the Senate and the Energy and Commerce Committee” and inserting “Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce”; and (C) by striking “Internet Web site” and inserting “website”; (3) in subsection (b)— (A) in the subsection heading, by striking “Health and Well-Being” and inserting “Mental Health Needs”; (B) in paragraph (1), by striking “health and well-being” and inserting “mental health needs”; and (C) by amending paragraph (2) to read as follows: “(2) CONTENTS.—The report submitted under paragraph (1) shall contain— “(A) an overview of policies and programs relevant to the mental health of individuals with autism spectrum disorder across their lifespan, including an identification of existing Federal laws, regulations, policies, research, and programs; and “(B) recommendations to improve mental health outcomes and address related disparities in mental health care for individuals with autism spectrum disorder, including prevention, care coordination, and community-based services.”; and (4) by adding at the end the following: “(c) Update on young adults and youth transitioning to adulthood.—Not later than 2 years after the date of enactment of the Autism CARES Act of 2024, the Secretary, in coordination with other Federal departments and agencies that serve individuals with autism spectrum disorder, shall 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 an update to the report required pursuant to subsection (b) of this section, as added by section 6 of the Autism CARES Act of 2014 and in effect before the date of enactment of the Autism CARES Act of 2019, concerning young adults with autism spectrum disorder and the challenges related to the transition from existing school-based services to services available during adulthood.”. (e) Authorization of appropriations.—Section 399EE of the Public Health Service Act (42 U.S.C. 280i–4) is amended— (1) in subsection (a), by striking “$23,100,000 for each of fiscal years 2020 through 2024” and inserting “$28,100,000 for each of fiscal years 2025 through 2029”; (2) in subsection (b), by striking “$50,599,000 for each of fiscal years 2020 through 2024” and inserting “$56,344,000 for each of fiscal years 2025 through 2029”; and (3) in subsection (c), by striking “$296,000,000 for each of fiscal years 2020 through 2024” and inserting “$306,000,000 for each of fiscal years 2025 through 2029”. ---
3. Expansion, intensification, and coordination of activities of National Institutes of Health with respect to research on autism spectrum disorder Read Opens in new tab
Summary AI
The section amends the Public Health Service Act to expand and intensify research on autism by the National Institutes of Health, including new areas of study like psychiatry and gerontology. It also requires a budget estimate for autism-related initiatives for fiscal years 2026 through 2029 to be submitted directly to the President and Congress.
4. Technical assistance to improve access to communication tools Read Opens in new tab
Summary AI
The Secretary of Health and Human Services can help states and other regions by providing training and support on how to use federal funds to help people with autism and similar conditions access communication aids. Each year, the Secretary must report on the assistance given and any new developments in these communication tools to certain Senate and House committees.