This chapter covers Sections 399DD(b)(2)(B) and (D) of the Public Health Service Act, as amended by the Autism CARES Act of 2019, which require: (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" and (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." Details are provided from the departments, agencies, divisions, and offices that are involved in research and services activities that directly or indirectly involve individuals with ASD, including HHS offices and agencies ACF, ACL, AHRQ, ASPE, CDC, CMS, HRSA, IHS, NIH, ODPHP, and SAMHSA, as well as DoD, ED, EPA, HUD, DOJ, DOL, NSF, SSA, DOT, and VA. The activities described include those undertaken in response to the COVID-19 pandemic to promote the health and well-being of autistic individuals.
Department of Health and Human Services (HHS)
The mission of the Department of Health and Human Services (HHS) is to enhance and protect the health and well-being of all Americans by providing effective health and human services and fostering advances in medicine, public health, and social services. HHS includes more than 300 programs and 11 operating divisions covering a wide spectrum of activities. The HHS offices and agencies represented in this Report support research and services that address the needs of individuals on the autism spectrum and their families.
Administration for Children and Families (ACF)
The Administration for Children and Families (ACF) promotes the economic and social well-being of families, children, individuals, and communities. ACF programs aim to:
The ACF does not have any programs or funding specifically focused on provisions of the Autism CARES Act of 2019 or for promoting the health and well-being of individuals on the autism spectrum. However, ACF funds several offices and projects that support inclusion of young children with disabilities, including those with ASD.
The ACF Office of Head Start (OHS) promotes the school readiness of children ages birth to 5 from low-income families by enhancing their cognitive, social, and emotional development. According to the 2019 Head Start (HS) Program Information Report (PIR), 0.53% of total HS enrollment were children diagnosed with ASD. These children and their families received HS's comprehensive services in inclusive settings. The OHS Training and Technical Assistance Centers carry out significant work and activities that promote inclusion of children with disabilities, including those with ASD who are served in Early Head Start (EHS) and HS settings. OHS maintains the Head Start Center for Inclusion website, which offers a variety of resources that support early childhood educators to ensure that children with disabilities can participate as full members of their learning communities. OHS also maintains the disabilities services section of the Early Childhood Learning and Knowledge Center website which includes evidence-based resources that promote early identification, referrals, family support services, cross-agency collaboration, and resources related to access and full participation of young children with disabilities in inclusive learning environments.
The ACF Office of Planning, Research, and Evaluation (OPRE) studies ACF programs and the populations they serve through rigorous research and evaluation projects. These include evaluations of existing programs, evaluations of innovative approaches to helping low-income children and families, research syntheses, and descriptive and exploratory studies. OPRE is currently conducting the Study of Disability Services Coordinators and Inclusion in Head Start (2019 - 2024) that will provide a descriptive national picture of the Disability Services Coordinators workforce for EHS and HS, including AI/AN (Region XI) and Migrant and Seasonal Head Start (Region XII) grantees. It will also explore practices and policies for working with staff, families, children, and the community. This effort will explore how EHS/HS serves children with disabilities and their families and will seek to understand how EHS/HS collaborates with services in the community, including health providers, Local Education Agencies, and Part C.
OPRE is also conducting the Family and Childhood Experiences (FACES; 1997-2022) study to provide descriptive, nationally representative information on preschool-aged children in HS in Regions I-X, and AI/AN FACES (2015-2022) provides representative information for HS in Region XI, including the characteristics, experiences, and development of children and their families and the characteristics of the HS programs and staff who serve them. This study collects information on whether children have a disability, what type of disability (autism is grouped into the cognitive disability category), whether the children have multiple disabilities, and how many children with a disability have an Individualized Education Plan (IEP) or Individualized Family Service Plan (IFSP). Likewise, the Early Head Start Family and Child Experiences Survey (Baby FACES; 2009-2023) reports on the percentage of children in EHS programs in Regions I-X that have any special needs, the type of special needs (e.g., developmental disability or delay), and the percentage of children with an IFSP.
ACF maintains a webpage, "Autism Awareness and Acceptance in Early Childhood Education," which focuses on providing information on ASD to early childhood educators. The webpage includes fact sheets, helpful tips, advice on finding local resources, and links to multiple relevant websites. The tip sheets, compiled by ACF and NICHD at NIH, contain numerous strategies for working with children with ASD suggested by experts from across the country.
In addition to the ASD webpage, ACF has focused its attention on developmental and behavioral screening. While the emphasis of this priority is broad screening, rather than screening for specific disorders, the initiative has helped inform the early childhood field and ultimately helps children with all disabilities, including those with ASD.
The ACF Office of Refugee Resettlement (ORR) helps new populations immigrating to the U.S. to maximize their potential, providing people in need with critical resources to assist them in becoming integrated members of American society. Resources disseminated by ORR include ASD-related materials developed by ACF and CDC (i.e., Learn the Signs. Act Early.) to assist families with recognizing and addressing autism-related needs.
Administration for Community Living (ACL)
The Administration for Community Living (ACL) works to increase access to community support systems for older Americans and for people with disabilities across the lifespan. Its main activities and statutory authorities include administration of disability programs that support community living from which individuals with ASD may benefit.
The current research and development portfolio of the ACL's National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) focuses on the development of interventions to improve outcomes for individuals with disabilities such as ASD, including (1) community living and participation among children with autism, (2) education (primarily postsecondary education) and employment among transition-aged youth and adults with autism, and (3) community living and participation among transition-aged youth and adults with autism. The following grants either focus exclusively on autism or include people with autism in their populations of interest.
Intervention research to improve community living and participation outcomes for children with autism
Intervention research to improve education and employment outcomes for transition-aged youth and adults with autism
Intervention research to improve community living and participation for transition-aged youth and adults with autism
ACL's Administration on Disabilities oversees a number of federal programs that support quality community for individuals with disabilities, including programs funded under the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) and the Rehabilitation Act. The programs directly or indirectly impact individuals with DD, including those with autism:
COVID-19 Response for Individuals with Disabilities
During the COVID-19 pandemic, ACL has worked in partnership with the HHS Office for Civil Rights to ensure that state Crisis Standards of Care do not discriminate on the basis of disability. In addition, ACL has worked to ensure that people with disabilities, including individuals with developmental disabilities and on the autism spectrum, had equitable access to COVID-19 vaccines. ACL issued a document in 2021 cataloguing best practices in helping individuals with disabilities and older adults access COVID-19 vaccines.
Furthermore, ACL launched the Disability Information and Access Line (DIAL) to provide help with COVID-19 vaccinations for people with disabilities. DIAL is available at 888-677-1199 Monday-Friday from 9 a.m. to 8 p.m. (Eastern) or by email at DIAL@usaginganddisability.org.
The DIAL's trained staff is standing by to:
The hotline also can provide information and resources to answer questions and address concerns about the vaccines and can connect callers to information and services that promote independent living and address fundamental needs such as food, housing, and transportation.
DIAL is operated as a collaboration between a consortium of organizations serving people with disabilities and the National Association of Area Agencies on Aging (n4a). The consortium includes:
This collaboration benefits from the disability networks' extensive knowledge and expertise in meeting the needs of people with disabilities across the U.S. and n4a's decades of experience operating the Eldercare Locator, the only federally funded national information and referral resource that supports consumers across the spectrum of issues affecting older Americans.
Agency for Healthcare Research and Quality (AHRQ)
The mission of the Agency for Healthcare Research and Quality (AHRQ) is to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable and to work within HHS and with other partners to make sure that the evidence is understood and used. AHRQ does not receive funds from the Autism CARES Act of 2019 but does support research to determine the effectiveness and outcomes of interventions for individuals with ASD. Recent research projects that seek to improve the health and well-being of individuals with ASD are described below.
HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE)
The Assistant Secretary for Planning and Evaluation (ASPE) is the principal advisor to the HHS Secretary on policy development and is responsible for major activities in policy coordination, legislation development, strategic planning, policy research, evaluation, and economic analysis. The Office of Behavioral Health, Disability, and Aging Policy (BHDAP) within ASPE focuses on policies and programs that support the independence, productivity, health and well-being, and long-term care needs of people with disabilities, older adults, and people with mental and substance use disorders. The Division of Disability and Aging Policy is responsible for policy and data development, coordination, research and evaluation of policies and programs focused on the functioning and well-being of persons with disabilities and older adults. The Division is the focal point for crosscutting disability and aging collaboration within HHS and across the federal government. Alzheimer's disease and related dementias and intellectual and developmental disabilities, including ASD, are notable areas of engagement and expertise. Descriptions are provided for some current projects related to autism.
Dataset on Intellectual and Developmental Disabilities: Linking Data to Enhance Person Centered Outcomes Research
ASPE/BHDAP aims to build data capacity for person-centered outcomes research for the population with IDD through the creation of a publicly accessible, de-identified, linked dataset of IDD-relevant state-level data. The $1.5 million project is funded through the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF). The period of performance for the project is four years.
This pilot project will produce a linked dataset of the following state-level data sources: the National Core Indicators In-Person Survey, Supports Intensity Scale, Medicaid claims, and other relevant state-level data sources. The linked dataset will enable researchers to analyze relationships between various sociodemographic information, need for home and community based services, service utilization, service expenditures, and person-centered outcomes prior to and during the COVID-19 pandemic for individuals with IDD, including ASD.
The project includes an inter-departmental technical expert panel led by ASPE/BHDAP, with representatives from HHS [ACL/Administration on Disabilities (AoD), ACL/NIDILRR, CDC/National Center on Birth Defects and Developmental Disabilities (NCBDDD), NIH/ NICHD, NIH/NIMH, CMS/Office of Minority Health (OMH), CMS/Center for Medicaid & CHIP Services (CMCS)] and DOL (ODEP).
Response to the Coronavirus Pandemic
In response to the coronavirus pandemic, ASPE published two documents in July 2021: COVID-19 and People with Intellectual and Developmental Disabilities (Final Report) and COVID-19 Data on Individuals with Intellectual and Developmental Disabilities (Issue Brief). The purpose of the Final Report and Issue Brief was to examine state collection and reporting of COVID-19 data, COVID-19 infection prevention strategies, and COVID-19 vaccine prioritization for the IDD population at the state level to help inform future policies, programs, and practices that aim to reduce the risk of infection and mitigate adverse effects of COVID-19 and other infectious diseases for the population.
Centers for Disease Control and Prevention (CDC)
The Centers for Disease Control and Prevention (CDC) brings a unique public health perspective to the effort to fully understand ASD. This perspective includes reporting data on the occurrence of ASD, contributing to the understanding of risk and protective factors, and working to improve early identification of ASD and other DD. CDC conducts both intramural (internal) and extramural (i.e., grant and contract) activities and partners with grantees, federal and state governments and programs, and other stakeholders in these activities.
Early identification is an important step in promoting the health and well-being of individuals with ASD. CDC's "Learn the Signs. Act Early." program improves early identification through education and tools to identify developmental concerns so that children and their families receive the services and support they need as early as possible. Between January 2014 and August 2021, the "Learn the Signs. Act Early." webpages have received almost 45 million page views and are utilized by health care professionals, parents, early childcare providers, partners, program champions, and other early childhood professionals.
In addition to a range of information resources, "Learn the Signs. Act Early." has worked to establish partnerships to integrate developmental monitoring into programs and systems that serve young children and their families, including public health programs and childcare programs. There continues to be a strong focus on reaching low-resource families through partnerships with the HRSA Maternal, Infant, and Early Childhood Home Visiting and Healthy Start programs, the ACF Child Care Development Fund and Early Head Start/Head Start programs, and, particularly, the U.S. Department of Agriculture Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). The WIC Program aims to safeguard the health of low-income women, infants, and children up to age 5 who are at nutrition risk by providing nutritious foods to supplement diets, information on healthy eating, and referrals to health care.
In 2019, the program launched the Developmental Milestone Checklist Program - Online Implementation Guide for WIC Program Staff. The program itself is simple, with three components: (1) engaging graphics on the walls and floors of the WIC clinic introduce milestone monitoring in a fun and friendly way; (2) staff invite the parent to complete a parent-friendly milestone checklist during certification and mid-certification visits, or whenever there is a question or concern; and (3) staff review the checklist and make a referral if there are any missing milestones or other concerns are noted. Developed by the CDC in collaboration with the University of Missouri and WIC staff in Missouri, and tested in WIC clinics across the nation, the guide provides practical guidance and free access to everything a WIC program would need to implement developmental monitoring and referral, including recruitment and training videos, free customizable materials, access to environmental graphics (wall and floor decals), and practical, WIC-tested tips for implementation.
CDC has also supported six cohorts of Act Early Ambassadors since 2011. Ambassadors are state or territorial leaders working to increase collaboration and coordination among early childhood programs and improve early identification. The program currently supports Ambassadors in all 50 states, the District of Columbia, and three territories. This program has proven to be very effective in putting developmental monitoring into practice. Act Early Ambassadors continue to succeed in integrating developmental monitoring resources into state- or territory-wide early childhood systems, including childcare, home visiting, maternal-child health programs, Help Me Grow, early intervention, and care coordination.
In 2020, CDC funded 43 State and Territorial Act Early COVID-19 Response Teams to support families and systems affected by COVID-19. Teams were tasked with carrying out a state/territory-wide needs assessment, identifying and addressing barriers to early identification of children with ASD and other DD, and identifying strategies to improve resiliency among children and families. This initiative is focused on support for early childhood state systems through the network of Act Early Ambassadors to support recovery and strengthen resilience skills, behaviors, and resources of children, families, and communities.
In 2020, CDC also funded and launched a new pilot program, Children's Mental Health Champions, building off and expanding the Act Early Ambassadors model for children's mental health. Four of the twelve Champions, one each in Colorado, Georgia, North Carolina, and New Mexico, work to improve access and coordination of mental health services specifically for children with developmental disabilities and ASD. In addition, these four Champions support workforce development opportunities to increase the capacity and skills of providers to enhance their comfort in serving children with developmental disorders and co-occurring mental disorders.
In 2021, CDC initiated two pilot projects to improve early identification among American Indian/Alaska Native (AI/AN) children with developmental delays and disabilities including autism. The first is a project to fund two federally recognized AI/AN tribal nation or regional AI/AN tribally designated organizations to pilot AI/AN Tribal Act Early Ambassadors and carry out culturally appropriate translation, dissemination, and integration of "Learn the Signs. Act Early." resources. The second project will support three Public Health Associate Program (PHAP) associates to better understand strategies and opportunities to identify children with developmental delays in tribal communities.
CDC has actively collaborated with other federal agencies and non-federal organizations working to improve early identification and linkage to services for children with ASD and other DD. For example, CDC and HRSA are collaborating on outreach to federally qualified health centers to promote developmental monitoring and make them aware of "Learn the Signs. Act Early." resources. CDC and HRSA also continue to engage in Autism Coordination meetings and collaborate on Early Childhood Comprehensive Systems projects. CDC also works with ACF and ED to promote early identification through developmental monitoring and screening resources, including those from Birth to Five: Watch Me Thrive!, a coordinated federal effort spanning several HHS agencies (CDC, ACF, ACL, CMS, HRSA, NIH, and SAMHSA) and ED to encourage healthy child development, universal developmental and behavioral screening for children, and support for the families and providers who care for them. CDC and the American Academy of Pediatrics are collaborating in several ways to improve early identification in pediatric health care settings, including a messaging campaign and a new training for health care providers, "Milestones Matter: Don't Underestimate Developmental Surveillance."
CDC's ADDM Network also tracks progress toward early identification of ASD in multiple communities in the U.S. Early detection of ASD is important because an ASD diagnosis is sometimes necessary to begin early intervention services, and early intervention is linked with better outcomes. The ADDM Network has shown that there is considerable variability in the ages at which children with ASD first receive a comprehensive developmental evaluation and are first diagnosed with ASD. Importantly, the most recent ADDM data show that children born in 2012 had a higher cumulative incidence of ASD diagnoses by age 48 months compared with children born in 2008, which indicates more early identification of ASD in the younger group. In 2019 and 2020, five sites in the ADDM Network collected follow-up data among 16-year-old children with previous information in ADDM at age 8 years. These data will help inform public health strategies to improve identification of and services for children with ASD. Tracking 16-year-old adolescents with ASD can also provide valuable information on transition planning in special education services and the planned trajectory for post-high school years. Data from the ADDM Network can help inform efforts to ensure that children are evaluated and diagnosed as soon as possible after developmental concerns are identified and promote efforts for early and equitable identification of ASD and timely enrollment in services.
In 2019, CDC launched and updated an interactive autism data visualization website which presents the most up-to-date state-based autism prevalence information from four major data sources (ADDM Network, Special Education, Medicaid, and National Survey of Children's Health).
CDC's Child Development and Disability Branch in the Division of Human Development and Disability also conducts the Study to Explore Early Development (SEED) Teen, a follow-up study of SEED Phase 1 participants as they reach adolescence. The objectives of SEED Teen are to (1) describe the developmental trajectory of children identified at young ages as having ASD; (2) assess the health and functioning of adolescents with ASD and other DD; (3) characterize the health care utilization and needs of adolescents with ASD and other DD; (4) characterize the educational attainment and needs of adolescents with ASD and other DD; and (5) assess family impacts associated with having a child with ASD or other DD, with the goal of identifying strategies to help meet the unique needs of these families.
Through SEED Teen, CDC is collecting detailed data on the following topics: adolescent heath, including overall heath and co-occurring medical, mental health, and developmental conditions; use of health care services, medications, experiences with health care providers, and transition services; education, including use of school and other developmental services; current level of functioning and strengths and difficulties; child safety and stressful life events; and parental expectations and family impacts.
Data collection for SEED Teen began in July 2018 and was completed in March 2021. The final sample included over 850 participants, aged 12 to 16 years. A report using interim data was recently published in CDC's Morbidity and Mortality Weekly Report. This report found physical difficulties and co-occurring conditions, such as ADHD or anxiety, were more common among adolescents in the autism group, yet they were three times more likely than adolescents in the control group to have an unmet health care service need.
In 2020, as part of SEED Phase 3, CDC also collected information on the impact of COVID-19 on services, behaviors, and health to help inform public health strategies for children with ASD aged 3 to 9 years and their families, especially during public health emergencies. In-person assessments for ASD were suspended due to COVID-19, but CDC amended the study protocol to collect information to describe the impact of COVID-19 prevention efforts on children with ASD and their families compared to changes among children with other DD and children from the general population. Outcomes of interest among children included education and use of remote learning; changes in use of services and telemedicine; experiences with testing and mitigation strategies; and changes in routines, health, and well-being. Outcomes of interest among families included changes in household structure; health and well-being; finances, employment, and health insurance; changes in routines and support; and experiences with COVID-19 infection. Additionally, the study measured changes in behavior problems and everyday life skills among children before and after COVID-19. The study was completed in July 2021 with over 1,000 participants.
Over the next five years (2021-2026), CDC will invest more than $16 million to carry out follow-up studies on children and their families from all three phases of SEED (SEED 1-3) through a recent funding opportunity, CDC-RFA-DD-21-001. This study will include over 6,000 children and their families who completed the study, including approximately 1,700 children with ASD. Understanding the risk factors and expression of ASD from childhood through early adulthood will help us gain knowledge to improve the health and functioning of individuals with ASD as they mature, as well as service use and needs, and impact of ASD on their families.
Centers for Medicare & Medicaid Services (CMS)
The Centers for Medicare & Medicaid Services (CMS) is committed to strengthening and modernizing the nation's health care system to enhance quality, accessibility, and improved outcomes in the most cost-effective manner possible. CMS administers several programs that are available to individuals with disabilities, including those with ASD. These programs do not receive appropriations from the Autism CARES Act of 2019.
Medicaid is a federal-state partnership, in which states administer their Medicaid programs according to federal requirements. There are several eligibility pathways to Medicaid coverage, and individuals with ASD could be eligible through many of them, including the adult expansion group authorized by the Patient Protection and Affordable Care Act (PPACA; Public Law 111-148).;
CMS has provided a series of guidance documents intended to increase awareness and understanding of ASD and the role that Medicaid can play in supporting beneficiaries diagnosed with ASD. This includes an Informational Bulletin and a set of Frequently Asked Questions regarding options available under Medicaid for furnishing services to eligible beneficiaries with ASD. The Informational Bulletin outlines services to address ASD that may be covered under different section 1905(a) benefit categories, which includes: section 1905(a)(6) - services of other licensed practitioners; section 1905(a)(13)(c) - preventive services; and section 1905(a)(10) - therapy services. The Informational Bulletin also discusses requirements related to services for children beneficiaries under the age of 21 specified by section 1905(r) of the Social Security Act (the Act), known as Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit. Further, it discusses how states furnishing services to treat ASD under a section 1915(c) home and community-based services (HCBS) waiver or section 1915(i) Medicaid state plan HCBS benefit of the Act to children under 21 may have to transition those individuals to EPSDT coverage.
Medicaid's EPSDT benefit includes a comprehensive array of preventive, diagnostic, and treatment services for low-income infants, children, and adolescents under age 21. The EPSDT benefit requires screening services as well as physical, mental, vision, hearing, and dental services for children beneficiaries under age 21 that are appropriate and medically necessary services needed to correct and ameliorate health conditions, based on certain federal guidelines.
CHIP provides health coverage to eligible children, through Title XXI-funded Medicaid expansion programs and/or separate CHIPs. CHIP is administered by states, pursuant to federal requirements. Children beneficiaries in states providing a Title XXI-funded Medicaid-expansion receive the EPSDT benefits described above. Children beneficiaries in states providing a separate CHIP receive a set of benefits that may (but are not required to) include the EPSDT benefit. Approximately 15 states have elected to cover the EPSDT benefit in their separate CHIPs.
Since 2014, CMS has been providing technical assistance to state Medicaid agencies on coverage of services to children with autism under the state plan and adjudicating state plan amendments (SPAs) to add coverage of medically necessary section 1905(a) state plan services to children with ASD.
Home and Community-Based Services (HCBS)
Home and community-based services (HCBS) provide opportunities for Medicaid beneficiaries to receive services in their own home or community rather than institutional or other isolated settings. States can utilize a variety of federal authorities to design their HCBS programs, such as: section 1915(c) HCBS waivers, section 1915(i) state plan HCBS benefit, section 1915(j) self-directed personal assistance services state plan benefit, section 1915(k) "Community First Choice" option, and section 1115(a) demonstrations. HCBS programs afford states a way to provide services to various targeted populations which include those with IDD (including persons diagnosed with ASD), physical disabilities, and/or mental illness. States may propose to provide defined populations services such as behavioral therapies, respite care, personal care, and expressive therapies. These services must be coordinated with state plan services required under the EPSDT provisions discussed above, to ensure children beneficiaries under the age of 21 are receiving appropriate services.
The Medicaid HCBS authorities discussed above may authorize Medicaid payment of nutritional and social activities, when linked to an assessed need of a Medicaid-eligible individual and reflected in his/her person-centered service plan. States determine which HCBS service array to provide to targeted populations, which can include individuals diagnosed with ASD.
In September 2019, CMS initiated the HCBS Special Projects contract to advance the delivery of HCBS for specific Medicaid-eligible populations, including youth with disabilities who are transitioning out of the foster care system and adults with IDD living with and cared for by aging parents and guardians. In addition, the contract focused on strategies to address the direct service workforce furnishing home and community-based services under the Medicaid program.
Specific activities under this contract include:
CMS has also incorporated a technical expert workgroup for each project. This contract continues through September 29, 2022.
Health Homes
Health Homes is a Medicaid State Plan optional benefit authorized under section 1945 of the Act. In addition, beginning October 1, 2022, as authorized under section 1945A of the Act, a new Medicaid state plan optional benefit will be available to states who elect to provide coordinated care through a Health Home for children with medically complex conditions. Health Homes provide a comprehensive system of care coordination for qualified Medicaid beneficiaries with chronic conditions, such as mental health conditions, substance use disorder, asthma, diabetes, heart disease, and overweight (body mass index [BMI] over 25). States may target other conditions like IDD, including autism. For example, Delaware elected to add the Health Home benefit to target individuals with IDD, including autism, along with other conditions. States also have the option to provide Health Homes in CHIP.
Health Home providers integrate and coordinate all primary, acute, behavioral health, and long-term services and supports to treat the "whole-person." Health Homes are responsible for both clinical and non-clinical needs of the individual and work with all the individual's care providers to establish prevention strategies and ways to educate the individual about their condition and to support the individual in maintaining wellness and improving overall health quality. States receive a 90% enhanced match for the first eight quarters from the effective date of their state plan amendment and their regular service match rate thereafter. More information about this program is available online.
Listed below are the six Health Home services provided under the Health Home state plan benefit:
Money Follows the Person (MFP)
The Money Follows the Person (MFP) Demonstration supports state efforts to rebalance their long-term support systems so that individuals have a choice of where they live and receive services. Individuals with IDD, including autism, represent approximately 14% of MFP program participants. States have used the flexibility made available through MFP to provide HCBS to support individuals with IDD who may have more complex and behavioral needs, including individuals with autism, so they can transition from medical institutions to community-based settings without losing access to appropriate and necessary long-term services and supports.
Under the Consolidated Appropriations Act, 2021, (CAA; Public Law 116-260) the MFP demonstration received additional funding through federal FY 2023. In addition, the CAA made the following changes to MFP participant eligibility criteria: (1) the minimum length of time required in an inpatient facility changed from 90 days to 60 days and (2) struck the text related to "short-term rehabilitative services" after section 6071(b)(2) of the Deficit Reduction Act, as amended by section 2403 of the PPACA. These statutory changes to the length of time required in an inpatient facility to determine MFP eligibility allow state recipients to provide community transition services under MFP earlier in an eligible individual's inpatient stay. These changes were effective 30 days after enactment of the CAA on December 27, 2020.
Health Resources and Services Administration (HRSA)
The Health Resources and Services Administration (HRSA) is the primary federal agency for improving health care for people who are geographically isolated, economically or medically vulnerable. Under the Autism CARES Act of 2019, HRSA received funding to increase awareness of ASD and other DD; reduce barriers to screening and diagnosis; support research on evidence-based interventions; promote the development of guidelines for evidence-based practices; and train health care professionals to provide screening, diagnostic, and early, evidence-based intervention services for children with a confirmed diagnosis. To meet these objectives, HRSA funded grant programs in three areas: Training, Research, and State Systems Development. HRSA also funded two national resource centers to provide technical assistance to and promote collaboration among grantees.
Through their collective efforts, HRSA's programs are increasing access to early and appropriate developmental screening, diagnostic, and intervention services, and improving effectiveness of support services available to youth making the transition to adulthood. A description of significant progress follows.
Training Programs
HRSA supports 52 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) training programs and 12 Developmental-Behavioral Pediatric (DBP) training programs to address the shortage of trained professionals who can provide screening, diagnostic services, and treatment for children and youth with ASD/DD. Programs are located in 44 states, with partnerships that extend to several U.S. territories. The current cohort of LEND grantees was awarded funding in 2016 for a five-year project period. In 2018, HRSA expanded the DBP program from 10 to 12 grants for a five-year project period.
The LEND training program provides interdisciplinary training to enhance the clinical expertise and leadership skills of professionals dedicated to caring for children with neurodevelopmental and other related disabilities, including ASD. The LEND program promotes education, early detection, and intervention in ASD. LEND program trainees participate in academic, clinical, leadership, and community learning opportunities and receive training in cultural and linguistic competence using a family-centered approach.
The DBP training program trains the next generation of leaders in developmental-behavioral pediatrics to build capacity to evaluate, diagnose or rule out, develop, and provide evidence-based interventions to individuals with ASD/DD. The DBP training program promotes the health and well-being of individuals with ASD/DD with specific attention to the broad range of behavioral, psychosocial, and developmental issues that present in primary care pediatric practice. The primary focus of the program is to train subspecialists in DBP to expand the workforce able to diagnose ASD/DD; provide effective treatment and interventions; support systems of care, such as state Title V and other maternal and child health (MCH) agencies; and conduct research.
Interdisciplinary clinics associated with the LEND and DBP training grants are making evidence-based interdisciplinary services available across the nation, particularly in underserved communities. Each year, the LEND and DBP programs enroll long-term trainees to receive at least 300 hours of intensive didactic training and clinical experience working in hospitals, clinics, and community-based settings that provide diagnostic or intervention services for children and youth with ASD/DD. Collectively, the programs also provide training to other health professionals, including medical residents, to increase their understanding of ASD/DD and make them aware of emerging evidence regarding ASD evaluation and interventions.
The most recent publicly available data for LEND and DBP programs is from FY 2019. In FY 2019, the LEND and DBP programs reached 1,596 long-term trainees, 4,786 medium-term trainees, and 18,871 short-term trainees. By preparing these professionals to implement recommended screening practices and use evidence-based tools, the training programs are improving early identification of ASD/DD. The training programs also reach an extensive network of providers with continuing education, reaching 152,021 participants in FY 2019.
Data collected from the LEND and DBP programs show the direct impact of these investments on families affected by ASD/DD. The programs provided interdisciplinary diagnostic services for 121,610 infants and children in FY 2019. By training providers to gain additional skills in these areas, the programs contribute to the pool of providers able to provide diagnostic evaluations and entry into intervention services. The training programs are helping to address disparities in early identification of ASD by expanding their reach to underserved populations through innovative mechanisms including telehealth and teleconsultation. During the COVID-19 pandemic, most LEND activities were delivered virtually, including didactic training for trainees and fellows. Some sites were able to conduct virtual interdisciplinary clinical activities that involved trainees. For example, telehealth and teleconsultation increased during the pandemic in order to meet the needs of individuals and families with ASD/DD.
As part of the training grants, LEND and DBP programs provide technical assistance to and collaborate with other entities to enhance systems of care for children and youth with ASD and their families. Some LEND grantees have implemented innovative programming activities to address improved health outcomes and well-being for individuals with ASD. A few examples that highlight the ways in which LEND and DBP programs address comprehensive approaches to improving health and well-being for individuals with ASD/DD through community-based supports, nutritional, recreational and social activities, and personal and public safety services are included below.
Research Programs
HRSA's autism research programs currently support four national Autism Intervention Research Networks (five-year project period), two Autism Single Investigator Innovation Programs (Autism SIIP) (five-year project period), the Autism Field-Initiated Research Studies (Autism FIRST) Program (three-year project period), and the Autism Secondary Data Analysis Research (Autism SDAR) Program (one-year project period) to advance the evidence base on effective interventions to improve the health and well-being of children and adolescents with ASD/DD. These programs address the needs of underserved populations, such as low-income, racial/ethnic minorities, individuals who have limited access to services, and other underserved populations. The research programs promote the development of evidence-based guidelines for interventions, validate tools for screening and interventions, and disseminate information to health professionals and the public. In FY 2019, the Autism Research Networks and Autism Single Investigator Innovation Programs collectively enrolled over 7,831 participants in primary studies through 44 sites and 228,770 participants in secondary studies. Over 250 researchers were engaged in autism research and developed 46 peer-reviewed publications in leading scholarly journals.
HRSA's autism research programs support interdisciplinary, applied, and translational research that advances the evidence base on effective interventions to improve the health and well-being of children and adolescents with ASD/DD. The programs implement comprehensive approaches to improving health outcomes and well-being for individuals with ASD/DD, including community-based behavioral supports and interventions; nutrition, recreational, and social activities; and transition to adulthood as it relates to employment and social skills development. Tables 1-14 in Appendix III provide a detailed description of these projects/studies and the tools/guidelines developed under each autism research program.
Autism Intervention Research Networks
The Autism Intervention Research Networks establish and maintain an interdisciplinary, multicenter research forum for scientific collaboration and infrastructure building. They provide national leadership in research to advance the evidence base on effective interventions for children and adolescents with ASD/ DD as they transition to adulthood across the lifespan. The Research Networks develop guidelines for those interventions and disseminate information related to such research and guidelines as authorized by the Autism CARES Act of 2019.
Autism Single Investigator Innovation Program (Autism SIIP)
The Autism SIIP supports two projects focused on priority or emerging ASD/DD research areas and research topics with limited research.
Autism Field-Initiated Innovative Research Studies (Autism FIRST) Program
The Autism FIRST program supports research studies testing the implementation of new/innovative strategies that address critical issues surrounding the health of children and adolescents with ASD. There is a special focus on addressing the needs of underserved populations and promoting health and well-being through supports and services offered to children and youth with ASD/DD (and their families) up to the age of 21, recognizing that these years lay the foundation for health and well-being across the lifespan.
Autism Secondary Data Analysis Research (Autism SDAR) Program
The Autism SDAR program supports secondary data analyses of national datasets and/or administrative records to advance the evidence base on interventions designed to improve the health and well-being of children and adolescents with ASD/DD, with a particular focus on addressing barriers to identification, diagnosis, interventions, and services among underserved populations.
State Programs
In FY 2019, HRSA funded five grants through the Innovations in Care Coordination for Children and Youth with Autism Spectrum Disorders and Other Developmental Disabilities Program. The purpose of the program is to improve access to coordinated and integrated care for children with, or at risk for, ASD/DD and their families in medically underserved areas and populations. The grantees are implementing two strategies to achieve their goal: (1) increasing family navigation services to improve communication between families and primary and specialty providers and (2) providing education, training, and technical assistance through a learning community to providers and community-based organizations on improving care for children with/at risk for ASD/DD.
The state system grantees improved quality of care among children and youth with ASD/DD by promoting family engagement through training, outreach, resource development, and quality improvement activities, which included children and youth with ASD/DD and their family members. During FY 2018, nearly 80,000 individuals received services to facilitate family engagement including through family navigation and other strategies. More than 37,000 individuals were reached by services to promote and facilitate screening and follow up care, and the grants helped more than 200 individuals access and use services through medical homes.
Indian Health Service (IHS)
The Indian Health Service (IHS) is responsible for providing federal health services to American Indians and Alaska Natives (AI/AN). The provision of health services to members of federally recognized Tribes grew out of the special government-to-government relationship between the federal government and Indian Tribes. This relationship, established in 1787, is based on Article I, Section 8 of the Constitution, and has been given form and substance by numerous treaties, laws, Supreme Court decisions, and Executive Orders. The IHS is the principal federal health care provider and health advocate for American Indian people, and its goal is to raise their health status to the highest possible level. The IHS provides a comprehensive health service delivery system for approximately 2.6 million American Indians and Alaska Natives who belong to 574 federally recognized tribes in 37 states.
The IHS mission is to raise the physical, mental, social, and spiritual health of American Indians and Alaska Natives to the highest level. The IHS vision is to promote healthy communities and quality health care systems through strong partnerships and culturally responsive practices.
The strategic goals of IHS are to:
The IHS does not have any programs or funding specifically focused on provisions of the Autism CARES Act of 2019 or for individuals on the autism spectrum. However, as a federal health care organization, IHS does provide services to AI/AN patients with ASD.
Indian Children's Program (ICP)
As part of the IHS mission to raise the physical, mental, social, and spiritual health of American Indians and Alaska Natives to the highest level, IHS is committed to providing education, training, consultation, and resources to clinicians treating patients with neurodevelopmental disorders, including ASD, through the IHS Indian Children's Program (ICP). In 2016, the ICP transitioned under the IHS Telebehavioral Health Center of Excellence (TBHCE) to become a national program. The TBHCE currently provides training and support to health care providers regarding behavioral health, family, and social issues facing AI/AN youth diagnosed with neurodevelopmental disorders, including ASD. These services are available to all IHS, Tribal, and urban Indian organization providers and include no-cost continuing education credits. Currently, IHS has 28 webinars on ASD and autism-related topics available any time to any health care provider providing care to American Indian and Alaska Native patients.
In response to COVID-19, IHS provided three webinars to assist health care providers in supporting families of children with ASD and other neurodevelopmental disorders during the COVID-19 pandemic. Topics in the IHS COVID-19 Response Webinar Series included:
In 2021, IHS hosted a webinar training series on ASD to develop health care providers' skills to treat individuals with ASD. Topics included:
In observance of World Autism Day on April 2, 2021, IHS hosted the third annual Autism Awareness Interagency Roundtable. Various agencies shared their ASD policies and how each aims to maximize the quality of life of those with ASD. Federal officials and Autism Speaks also discussed recent collaborations, important resources for those with ASD, the impact of COVID-19 on services, and held a Q&A session.
Behavioral Health Integration Initiative (BH2I)
The IHS established the Behavioral Health Integration Initiative (BH2I) in 2017, awarding $6 million to 12 projects for a three-year funding cycle. BH2I projects plan, develop, implement, and evaluate behavioral health integration with primary care, community-based settings, and/or integrating primary care, nutrition, diabetes care, and chronic disease management. The purpose of BH2I is to improve the physical and mental health status of people with behavioral health issues by developing an integrative, coordinated system of care between behavioral health and primary care providers.
One example of how IHS and other federal agency programs can work together to benefit AI/AN children is shown in funding to the Muscogee (Creek) Nation (MCN). In 2012, the MCN received funding as a part of SAMHSA's Project LAUNCH (Linking Actions for Unmet Needs in Children's Health) grant allowing them to identify the needs, barriers of services, gaps in the current provision of services, and other problems related to the needs and implementation of wellness activities and services for Native American children from birth to 8 years of age. The Survey of Well-Being of Young Children (SWYC) developmental screening was used to help in the assessment process. Through this assessment, they identified their best course of action was early intervention with the Tribal Head Start population. Though the Head Start programs were a good start in the identification and intervention of services to children, they soon realized they needed to add services within the tribal pediatric primary care clinics. The request for the BH2I grant was written to help fill that need. In 2017, MCN Behavioral Health Services was awarded a BH2I grant to address the unmet needs for children and youth.
MCN continued infrastructure development while providing early identification, intervention, and treatment services. BH2I continues to provide some services in Head Starts, but its primary role is integration of behavioral health services in the pediatric primary care clinics. Services are provided to all patients, ages 0 to 18, as well as parental screening and supports. Behavioral Health Clinicians (BHCs) are housed in the primary care clinic alongside the pediatrician and nursing staff. The BHCs have specialized training in Integrated Medicine and are able to offer patients a range of services from basic mental health to full wellness services.
Upon entry to the pediatrician's office, universal screening instruments are administered to each patient whose guardian consents to participate. The age of the child determines which standardized screening is offered. In addition, the SWYC is completed, for ages 0 to 5, by the parent every three months or at well-child exams to screen for development, additional symptoms, parental, and environmental concerns. Other screening instruments that are administered are listed below:
If any concerns are identified from the screening instruments or from the pediatrician's exam, the BHC is asked to meet with the patient and offer brief services. The BHCs attend the behavioral health staff meetings to consult on the most concerning patients. If a patient has received all services available within the pediatric clinic with no progress, then a referral is made to a partnering internal tribal provider or an outside partnering provider such as outpatient mental health treatment, psychiatry or psychology, occupational or speech, nutrition or dietician, or other specialty treatment providers.
National Institutes of Health (NIH)
The National Institutes of Health (NIH) is the nation's medical research agency. NIH's mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability. As part of this mission, NIH supports scientific research to better understand the causes and mechanisms underlying ASD, improve methods of early identification and diagnosis, and develop interventions to improve overall health among children, adolescents, and adults with ASD (e.g., PA-21-199/-200/-201). NIH makes coordinated efforts to invest in a wide range of ASD research. Information on aggregate NIH funding for autism can be found on NIH's Research Portfolio Online Reporting Tools (RePORT) under Research, Condition, and Disease Categories (RCDC).
NIH Autism Centers of Excellence (ACE)
NIH created the ACE Program in 2007 with a series of five-year awards to launch an intense and coordinated research program into the causes of ASD and to find new treatments. Now in its 14th year, the ACE Program continues to make substantial progress in addressing a wide array of important issues facing the health and well-being of individuals with ASD and their families. Current ACE grantees are examining issues that include the genetic etiology of autism, the neurodevelopmental underpinnings of ASD, improving cognitive and developmental outcomes, how boys and girls with ASD differ in their brain circuity, improving screening and diagnosis of ASD, improving access to services for minority children with ASD, and developing novel interventions and services through new delivery methods. Furthermore, the five ACE Centers (P50HD093079, P50HD055784, P50MH115716, P50HD093074, P50MH100029) and five ACE Networks, which involved multiple institutions (R01MH100027, R01MH100028, R01HD055741, R01MH115715, R01HD093055), have been critical training venues for developing and mentoring the next generation of leading investigators and clinicians in the field of autism research and treatment. The ACE Program is supported by the NICHD, the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), NIMH, and the National Institute of Neurological Disorders and Stroke (NINDS). These Institutes plan to renew the ACE Program in 2022 (NOT-HD-21-006/-007).
NIH Early Autism Screening Initiative
In October 2019, the NIH awarded research grants to seven separate teams of investigators to support projects focused on developing and validating screening tools to detect signs of ASD in the first year of life. Efforts to improve our ability to screen and identify autism at earlier ages will allow families and care providers to enroll children in early interventions, services, and treatments that have been shown to improve developmental outcomes, overall well-being, and readiness for school (R01MH121363, R01MH121364, R01MH121329, R01MH121345, R01MH121344, R21HD102078, R21HD100372). NICHD, NIDCD, NIMH, and NINDS support these projects.
Autism Biomarker Development
An NIH-funded multi-site study, the Autism Biomarkers Consortium for Clinical Trials (U19MH108206) has made substantial progress in developing electroencephalogram (EEG) and eye tracking measures that show promise as potential biomarkers that can reduce heterogeneity within research samples via stratification and/or serve as sensitive and reliable objective measures of social impairment in ASD clinical trials. The EEG and eye-tracking measures were accepted by the U.S. Food and Drug Administration (FDA) in its Center for Drug Evaluation and Research (CDER) Biomarker Qualification Program as potential stratification markers in ASD clinical trials. In 2020, the same investigative team received NIH funding to conduct the second stage of this study. In this second stage, researchers aim to follow-up with the original study cohort to examine the longer-term stability of these measures, with re-administration of the biomarkers and clinical tests; sample a new cohort of children to see if the original findings can be replicated and confirmed; perform a feasibility study to examine how the same EEG and eye tracking measures operate in children ages 3 to 5, both with and without ASD; and continue collecting blood samples and data sharing. This research is supported by NICHD, NIDCD, NIMH, and NINDS.
Autism Genomics Research
In the area of genomics research, NIH initiatives and programs continue to make significant strides to better understand and identify the biological cause(s) of autism and its genetic architecture. Through large-scale efforts that involve multi-site research collaborations and extensive data sharing, the NIH has significantly broadened the repository of genetic data on individuals and families affected by ASD. This has enabled researchers to interrogate the vast array of potential genetic mechanisms that increase risk for ASD and to increase the ancestral diversity of ASD participants in genomics research. Examples include the renewal of an NIMH-funded Autism Center for Excellence focused on recruitment in the African American community (R01MH100027), as well as an effort to explore the genetic relationship between ASD, ADHD, and IDD in South Africa (U01MH119689). The South Africa project came in response to the rare disorder initiative (RFA-MH-19-200/-201).
NIMH-supported genomics consortiums are continuing to increase the size of their ASD cohorts to increase power. As the size of cohorts increase and enable higher powered studies, researchers are now seeking to disentangle the relationship between genetic architecture and the heterogeneity of observed traits (e.g., R01MH111813), as well as the relationship to IDD and the role of mutations on the X chromosome. There is ongoing work following up on possible genetic risk mechanisms. For example, a recent large-scale sequencing study identified specific genes differentially related to two distinct types of ASD: ASD characterized by extensive co-occurring neurodevelopmental or cognitive deficits and ASD without co-occurring neurodevelopmental or cognitive disorders. 38 Furthermore, the Report of the National Advisory Mental Health Council Workgroup on Genomics specifically encouraged follow-up of high-confidence genes with strong genome-wide significance. 39
Deeper understanding of rare genetic disorders thought to be associated with autism and co-occurring conditions may advance understanding of ASD due to other causes and pave the way for broadly applicable treatments. NINDS, NIMH, NICHD, and the National Center for Advancing Translational Sciences (NCATS) support the Developmental Synaptopathies Consortium (U54NS092090), which conducts studies of genetic conditions (e.g., associated with TSC1/2, PTEN, and SHANK3 mutations) that affect the synapses between neurons in the brain and are associated with a high risk for ASD and ID, to uncover shared molecular pathways and new therapeutic targets. This consortium led to an additional project that aims to establish electrophysiological biomarkers of Phelan-McDermid syndrome (resulting from SHANK3 mutations), use these biomarkers to identify an overlapping subset of children with ASD, and evaluate whether the biomarkers are predictive of treatment response in a clinical trial (R01NS105845). Another project will use neuroimaging to investigate brain mechanisms underlying autism in children with neurofibromatosis type 1 (R21NS106135).
Autism Gene-Environment Interaction Research
NIEHS supports research on the interplay of genetic predisposition in the presence of certain environmental factors (e.g., infection, air pollution, nutrition) in an effort to provide a more complete picture of how ASD and relevant comorbidities may arise. Gene-environment interaction research may help identify/ characterize high-risk groups or subgroups of individuals with ASD, identify potentially modifiable risk factors, and inform novel treatments, as well as the development of targeted interventions that may reduce disability and comorbidity (e.g., ADHD). For example, one NIEHS-funded study is building on 18 years of research, having identified numerous chemicals (e.g., air pollutants), nutritional factors (e.g., folic acid), and maternal health conditions (e.g., infection) associated with altered risk for ASD and secondary disabilities (R01ES031701). NIEHS-funded researchers are also examining how traffic-related pollution, in the context of many genes that include those involved in detoxifying chemical and nervous system development, may increase risk for ASD or ADHD in children (R01ES026993). Given the shared biologic pathways between some genes and certain environmental exposures, these projects may help advance etiologic research toward targeted interventions that reduce risk for ASD-associated disabilities and co-occurring conditions.
Additionally, understanding the role that maternal exposures have on brain development and other birth outcomes may lead to new strategies to prevent or ameliorate ASD-associated disabilities. For example, NIEHS-funded researchers aim to determine associations between ASD risk and prenatal serum concentrations of endocrine disruptors (chemicals that interfere with the hormonal system; R01ES026904). They are also assessing whether gender modifies sensitivity to prenatal endocrine disruptor exposure and whether concentrations of endocrine disruptors, singly and in combination, contribute to individual differences in ASD phenotype and severity. Other NIEHS-supported researchers are examining common, early-life metals exposure (via shed deciduous teeth as biomarkers) on the development of ASD and dimensional ASD phenotypes, as well as cognitive development and adaptive function (R01ES029511). NIEHS-funded researchers are also examining the relationship between prenatal exposure to environmental contaminants and vitamin supplements as risk factors for ASD, schizophrenia, and ADHD (R01ES028125).
Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers
NICHD's Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers support research at 14 universities and children's hospitals across the U.S. to provide support for research in people who have IDDs, including some individuals on the autism spectrum, and advance the development of therapeutics and interventions for these conditions. Research projects include comprehensive "-omics" (i.e., genes, proteins, and metabolites that may underlie fundamental mechanisms) approaches to increase our understanding of risk and resilience, development of innovative technologies to improve assessment and intervention, characterization of auditory brain processing in those with ASD who are minimally verbal or nonverbal, and testing interventions and management of co-occurring health conditions. A group of scientists at one of these centers discovered that identical twins with ASD often experience large differences in severity of disability, even though they share the same DNA. Scientists are working on identifying the causes of this variability to inform the treatment of disabling aspects of ASD (U54HD087011).
Interventions Research
NIH Institutes and Centers are funding projects that are developing and evaluating a range of interventions. For example, an NINDS clinical trial is testing whether presymptomatic treatment with anti-seizure medication prevents epilepsy in infants with Tuberous Sclerosis Complex (TSC, a genetic condition with high risk for ASD and IDD) and whether treatment improves cognitive and behavioral outcomes or reduces the likelihood of developing ASD (NCT02849457, U01NS092595). NINDS, NICHD, and NIDCD are supporting a second trial (NCT02920892, U01NS096767) testing whether an mGluR5 inhibitor, in combination with an intensive language intervention, can boost language learning in children with Fragile X Syndrome (FXS). Negative modulators of mGluR5 have been reported to correct a broad range of phenotypes related to FXS, many of which are similar to ASD. Another NINDS-funded research study aims to develop quantitative brain imaging biomarkers that could be used to identify ASD and to evaluate and predict responses to therapeutic interventions (R01NS035193).
NIDCD is supporting intervention development targeting the language and communication challenges associated with ASD. Examples include studies to improve language outcomes in minimally verbal children with ASD (P50DC018006, K99DC017490), a web-based program to enhance social communication skills for employment success in autistic youth (R43DC016769), a visual communication aid for improved comprehension of classroom instruction for students with ASD (R43DC017633), and an intervention to improve reading in children with ASD (R01DC016303).
NICHD-funded researchers are also developing a variety of therapeutic and intervention approaches, including a community-based adaptive intervention for toddlers with ASD (R01HD098248) and an evaluation of augmentation strategies for use when children with ASD are slow to respond to initial interventions. A small controlled clinical trial of a drug, arginine vasopressin (AVP), showed that intranasal AVP may improve social behaviors in children with ASD. The AVP medication was well-tolerated and produced minimal adverse effects. 40
NICHD also supported the development of a virtual reality "smart glasses" application to encourage facial engagement and provide feedback to a child with ASD during social interactions. Children using the application to augment ABA showed significantly improved emotion recognition and facial engagement. 41
Research on Long-term Outcomes
Children who have ASD often receive services through school systems. A longitudinal analysis of services, ranging from physical or speech therapy to personal care or respite services over 14 years, found that people with ASD received significantly fewer services after high school. The decrease in services was greater for those who had ASD and ID than it was for those who only had ASD. 42 NICHD-funded scientists are working to address long-term outcomes of children with ASD. For example, one group of researchers is assessing the long-term outcomes of children with ASD at ages 14 to 15 who received early intensive behavioral intervention in the preschool years (R01HD087302). Another group of researchers is working to identify the behavioral and social factors in early childhood that contribute to positive and negative outcomes in adults with ASD (R01HD081199).
ASD Pediatric Early Detection, Engagement, and Services (PEDS) Network
Beginning in 2014, NIMH supported five research grants that composed the ASD PEDS Network (R01MH104302, R01MH104355, R01MH104400, R01MH104423, R01MH104446). ASD PEDS researchers tested strategies for universal screening coupled with referral to and engagement in services when indicated for children with ASD from 12 to 36 months of age. The researchers also examined the issues surrounding coordination among different settings including primary care and community service agencies. The ASD PEDS investigators compiled information across their individual studies and identified common implementation strategies (e.g., developing stakeholder relationships and provider trainings) and barriers (e.g., inefficient systems of care, difficulty engaging families in the interventions, provider attitudes, and organizational culture). They found that despite diverse settings and a variety of innovation content, common facilitators and challenges exist in implementing innovations to enhance access to early ASD screening, diagnosis, and treatment. 43 Findings from one of the ASD PEDS projects suggest that an ASD diagnosis becomes stable starting at age 14 months and overall is more stable than any other diagnostic category including language or developmental delay. 44 Furthermore, once a child is identified as having ASD, there is an extremely low chance that he or she will test within typical levels at age 3. This finding opens the opportunity to test the impact of very early age treatment of ASD. Main findings from a second ASD PEDS project suggest that utilizing "family navigators" to engage caregivers in recommended services improved the likelihood of diagnostic ascertainment among children from racial/ethnic minority, low-income families who were detected in primary care as at-risk for ASD. 45
Early Screening Recommendation
In February 2016, the U.S. Preventive Services Task Force (USPSTF) issued a recommendation on early screening for ASD. The USPSTF found that the evidence at the time of their review was insufficient to assess the balance of benefits and harms of screening for ASD in children aged 18 to 30 months for whom no concerns of ASD have been raised by their parents or a clinician. In 2017, NIMH issued a Notice (NOT-MH-18-001) to encourage administrative supplement requests to collect data from active NIMH-funded studies that were relevant to the 2016 USPSTF recommendation. In April 2018, NIMH supported five supplement requests focused on the measurement of short-term and intermediate risks and benefits of early ASD screening and preliminary validation of broadband screening instruments testing young children at age 12 months. In addition, NIMH-funded research is identifying and addressing disparities in access to screening, diagnosis, and treatment services among ethnic and racial minority children at risk for ASD. In March 2021, NIH Institutes and Centers provided feedback to the USPSTF request for public comment on its draft research plan on screening for ASD in young children. In June 2021, USPSTF posted the final research plan.
Identifying and Addressing the Needs of Transition-Aged Youth and Adults with ASD
NIMH supports services research projects on transition-aged youth and adults with ASD. "Transition-aged youth with ASD" refers to individuals with ASD who, in the coming months or years, will age out of the services and supports delivered via K-12 education and other child/adolescent service systems. NIMH's portfolio includes development and preliminary testing of interventions to improve a range of skills and functional outcomes. Additionally, researchers aim to refine strategies to measure functional outcomes in these age groups. Research projects also include a focus on improving competitive employment outcomes, strategies for achieving self-management of co-occurring health conditions, improving understanding of social relations, and engaging siblings of adults with ASD in future planning to achieve optimal long-term outcomes (R34MH111556, R34MH111536, R34MH111531, R34MH111491, R34MH111489). NIMH is also addressing the need for more research aimed at fostering effective and developmentally appropriate services for adults and transition-aged youth by enriching the pool of autism researchers focused on this specific population, through career development and enhancement awards (RFA-MH-20-420/-421). One NIMH-funded career enhancement award recipient is examining a strength-based intervention to improve job interview skills in transition-aged youth with ASD (K18MH122847). In addition to NIMH's efforts, NINDS is supporting research to address complex, real-world activities that may present challenges for transition-aged youth and adults with ASD. For example, NINDS-funded researchers are using brain imaging to evaluate motor and cognitive control impairments associated with driving performance in adolescents with ASD (R21NS118410).
NIH Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) Initiative
NIH created the RADx-UP initiative to reduce COVID-19-associated morbidity and mortality disparities for those vulnerable and underserved populations that are disproportionately affected by, have the highest infection rates of, and/or are most at risk for adverse outcomes from contracting the virus. This initiative encourages researchers to leverage partnerships with key stakeholders to conduct community-engaged research to understand COVID-19 disparities and to increase the effectiveness of and access to COVID-19 diagnostic testing interventions among medically underserved and/or socially vulnerable populations. Through the RADx-UP initiative, NIH-funded researchers aim to address the urgent needs of vulnerable populations, such as individuals with IDD, including individuals on the autism spectrum. For example, NICHD-funded researchers are examining an FDA-approved saliva-based SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2, the virus that causes COVID-19) tests for students, teachers, and staff in special education schools (P50HD103525). Other NICHD-funded researchers are evaluating surveillance testing approaches and mitigation strategies to guide the safe return to school for vulnerable children with IDD and staff (OT2HD107556) and assessing national perspective among parents of children with IDD and school staff regarding the impact of COVID-19 and the importance of SARS-CoV-2 testing (OT2HD107553).
HHS Office of Disease Prevention and Health Promotion (ODPHP)
The HHS Office of Disease Prevention and Health Promotion (ODPHP) establishes and promotes national public health priorities to improve the health and well-being of all people, including those with ASD or other developmental disabilities. ODPHP manages the HHS Healthy People initiative, which helps individuals, organizations, and communities committed to improving health and well-being address public health priorities through evidence-based, 10-year national objectives. Objectives for Healthy People 2030, the fifth and current iteration of the initiative, include increasing the proportion of children with ASD who receive special services by age 4 years and increasing the proportion of children who receive a developmental screening.
Substance Abuse and Mental Health Services Administration (SAMHSA)
The Substance Abuse and Mental Health Services Administration (SAMHSA) leads public health efforts to advance the behavioral health of the nation. SAMHSA's mission is to reduce the impact of substance abuse and mental illness on America's communities. SAMHSA-funded activities broadly impact the health and well-being of individuals with mental health conditions, including those with ASD, and their families.
Since 1993, SAMHSA has implemented the Congressionally mandated Comprehensive Community Mental Health Services for Children with Serious Emotional Disturbances Program, also known as the Children's Mental Health Initiative (CMHI). CMHI serves children and young adults (birth through 21) who are at risk or meet criteria for serious emotional disturbance. Approximately 3.7% of this population also has a co-morbid pervasive developmental disorder, which may include ASD. This initiative provides funds to public entities to create "systems of care," which are defined as a spectrum of effective, community-based services and supports for children and youth with or at risk for mental health or other challenges and their families, that is organized into a coordinated network, builds meaningful partnerships with families and youth, and addresses their cultural and linguistic needs, in order to help them to function better at home, in school, in the community, and throughout life.
SAMHSA currently funds 95 CMHI grants to support expansion of systems of care. Additionally, SAMHSA also funds 28 Circles of Care grants, which are planning grants specifically to tribal communities to assist in building the infrastructure to implement systems of care approach. These grants promote the expansion of system of care services and supports, including infrastructure development and collaboration and partnership between child-serving systems (e.g., child welfare, education, juvenile justice, primary care and substance abuse services and systems, and strategic financial planning), so that the system of care framework can be brought to scale and sustained after grant funding has ended. The most recent Report to Congress on this program details outcomes from a national evaluation of nine demonstration grants and presents information on Expansion and Sustainability grants.
Department of Defense (DOD)
The U.S. Department of Defense (DoD) is charged with coordinating and supervising all agencies and functions of the government concerned directly with national security and the U.S. Armed Forces. This Report provides details on research and service and support activities in the Army and the Military Health System (MHS)/TRICARE.
The DoD Autism Research Program (ARP) was first established through language in the 109th United States Congress, House of Representatives Conference Report (H.R. 5631) in FY 2007 with an appropriation of $7.5 million for research on ASD in the military. Following in FY 2008 through FY 2020, the DoD ARP has continued through the Defense Health Program with additional appropriations. From FY 2007 to 2020, a total of $104.4 million has been designated for research into ASD through an addition to the DoD appropriation bill. This program is not authorized or funded through the Autism CARES Act of 2019.
The ARP is a partnership between the DoD, researchers, and consumers. The vision and mission of the ARP has been to improve the lives of individuals with ASD now by promoting innovative research that advances the understanding of ASD and leads to improved outcomes for Service Members, their families, and the American public. This sense of urgency has resulted in funding research aimed at having an immediate impact on the health and well-being of those with ASD. These projects include those focused on investigating and improving health outcomes and promoting community inclusion for those living with ASD.
Physical and Mental Health
Employment, Education, and Social Inclusion
Military Health System TRICARE offers comprehensive medical care to over 9.4 million beneficiaries (active duty service members, military retirees, and their eligible family members), including approximately 2 million children. This also includes over 35,000 MHS beneficiaries (in FY 2020) diagnosed with ASD. The Military Health System (MHS) includes physician and other licensed independent provider services, pharmacy coverage, psychosocial treatment, psychological testing, occupational therapy, physical therapy, and speech and language pathology for the treatment of ASD to all eligible TRICARE beneficiaries under the TRICARE Basic Program, which is the medical benefit plan of the MHS. A separate but related TRICARE program, the Extended Care Health Option (ECHO), offers supplemental services to Active Duty Family Members (ADFMs) with a qualifying physical or psychologically disabling condition, including ASD. The Department has provided coverage for ABA services to family members of active duty service members since 2001 under various coverage authorities. Coverage for retiree family members was added on July 26, 2012. On July 25, 2014, all existing ABA service programs were consolidated into one demonstration, the Comprehensive Autism Care Demonstration (ACD), which provides a consistent ABA benefit program to all TRICARE eligible beneficiaries diagnosed with ASD. Approximately 16,000 TRICARE eligible beneficiaries are currently enrolled in the ACD (for FY 2020), with over 53,000 ABA providers rendering ABA services. Participation in ABA service programs has significantly increased since FY 2009. For FY 2019, the ACD costs totaled $376.9 million dollars. The ACD was originally scheduled to end December 31, 2018; however, the ACD has been extended until December 31, 2023, to obtain more information on how to classify ABA services under the TRICARE benefit and best serve military beneficiaries with ASD. The ACD removed all quantitative and non-quantitative limits on ABA services, including dollar caps, hour caps, and age caps. Over the course of the demonstration, the Defense Health Agency (DHA) has hosted various round table and information sessions for interested stakeholders including, but not limited to, ABA providers, Active Duty military providers, advocates, families, and congressional staff. Additionally, current ACD initiatives include TRICARE quality management audits, outcome measures, parent surveys, and DoD Office of the Inspector General audits. Most recently, the Department published a policy change that included a number of improvements to the ACD, including enhanced support to parents and caregivers, improved care coordination, and ensuring that services are directed to those beneficiaries who will benefit the most, with the focus always being on helping military beneficiaries diagnosed with ASD, and their families, to reach their maximum potential. Most services for military beneficiaries are provided through a contracted network of civilian providers; however, several military medical treatment facilities have recently developed programs to support beneficiaries diagnosed with ASD and their families. These initiatives include: To acquire additional information on ABA services under TRICARE, the DHA has been working with the Congressionally Directed Medical Research Program (CDMRP), which awarded a $7 million contract to a research group from the University of Rochester. The results of the CDMRP study will further DHA's understanding of the impact of ABA services delivered to ACD participants and aims to provide important data regarding the most beneficial amount of ABA services. Additionally, findings from this study may benefit the larger community of individuals diagnosed with ASD and their families in several ways, including, but not limited to, offering more choices to families, potentially identifying response to treatment through predictive factors, and lowering cost while increasing access. The CDMRP study was awarded September 2018. This study will provide annual reports to CDMRP starting in 2020 and has a duration of five years. Participant recruitment is ongoing at three sites: Vanderbilt University, Nationwide Children's Hospital, and the May Institute. Department of Education The mission of the U.S. Department of Education (ED) is to promote student achievement and preparation for global competitiveness by fostering educational excellence and ensuring equal access. ED supports programs to develop and implement evidence-based practices for services to youths and postsecondary students, as well as programs for individuals with disabilities who have graduated from high school or a postsecondary institution and are seeking vocational rehabilitation services. ED supports ASD-related services, supports, and research through programs administered by ED's Institute of Education Sciences (IES), the Office of Special Education and Rehabilitative Services (OSERS), and the Office of Postsecondary Education (OPE). An overview of these programs is provided below. Institute of Education Sciences (IES) The Institute of Education Sciences (IES) is the independent research, evaluation, and data collection arm of ED whose mission is to provide scientific evidence on which to ground education practice and policy and to share this information in formats that are useful and accessible to educators, parents, policy makers, researchers, and the public. Each of the four IES Centers supports work related to ASD. The programs and projects administered by the four IES Centers, which do not use Autism CARES Act of 2019 funds, are described below. National Center for Special Education Research (NCSER) The National Center for Special Education Research (NCSER) funds research on ASD primarily under the Special Education Research Grants Program (84.324A). This program supports research on comprehensive interventions that target multiple, coordinated outcomes, as well as targeted interventions focused on a single outcome (such as social communication). Studies funded under this program examine children with or at risk for ASD from infancy through the transition of secondary students to post-secondary outcomes. Additional research projects on ASD have been funded through Research Training Programs in Special Education; Special Education Research and Development (R&D) Centers; Low-Cost, Short-Duration Evaluation of Special Education Interventions; and unsolicited grant opportunities. In 2012, as part of the R&D Centers competition, NCSER funded the Center on Secondary Education for Students with Autism Spectrum Disorders (CSESA) to develop and test a comprehensive, school-based intervention to improve the cognitive, communicative, academic, social, behavioral, functional, and transition outcomes of secondary students with ASD. CSESA also disseminated information regarding evidence-based practices and reviews of research. Between FY 2012 and 2020, NCSER has funded 56 research projects related to improving outcomes for students with ASD for a total of approximately $96 million in funding. In June 2021, NCSER announced two new Research to Accelerate Pandemic Recovery in Special Education competitions to consider applications that directly address a problem, issue, program, policy, or practice that is related to the COVID-19 pandemic, important to a state or local education agency, has the potential to improve outcomes significantly and rapidly for students with or at risk for disabilities, and will provide actionable and timely results to districts and schools. While not specifically focused on students with ASD, research funded would benefit all students with disabilities, including students on the autism spectrum. National Center for Education Evaluation and Regional Assistance (NCEE) Through the Special Education Studies and Evaluation program, the National Center for Education Evaluation and Regional Assistance (NCEE) supports large-scale studies focused on children or youth with disabilities, including those with ASD. The National Longitudinal Transition Study 2012 (NLTS 2012) supports the collection of data on characteristics, school experiences, and outcomes after high school for a nationally representative sample of over 10,000 transition-aged youth with disabilities (ages 13 to 21), including approximately 1,000 youth with ASD. In 2017, NCEE released reports using NLTS 2012 data that included comparisons of youth with IEPs to youth without IEPs and outcomes for youth by disability category. A subsequent report released in 2018 compared survey data in 1987, 2003, and 2012 from the three NLTS, focusing on 15- to 18-year-olds with an IEP, including youth with ASD. National Center for Education Statistics (NCES) The National Center for Education Statistics (NCES) conducts longitudinal surveys as part of its mission to collect and analyze data related to education in the U.S. The Early Childhood Longitudinal Study, Kindergarten Class of 2010-11 (ECLS-K:2011), is a part of a series of longitudinal studies supported by NCES that provide information about children's cognitive, social, emotional, and physical development, as well as their home environment, educational activities, school and classroom environment, classroom curriculum, and before- and after-school care. This study included a nationally representative sample of kindergartners selected from public and private schools in 2010-11 who were followed through fifth grade. Approximately 4,920 students had been diagnosed with a disability by the end of the study, with approximately 240 of these students reported by their parents as having an ASD diagnosis. The Middle Grades Longitudinal Study (MGLS:2017) collected information on a cohort of sixth-graders in 2018 and then again in 2020. The study provides information on students' developmental and learning trajectories, as well as experiences in education, including those specific to students with disabilities, such as special education services and transition supports. National Center for Education Research (NCER) The National Center for Education Research (NCER) supports ED's SBIR program, which funds the development and testing of education technology products to improve education outcomes. One priority area within the SBIR program focuses on improving outcomes for children with or at risk for disability. As part of this priority area, NCER has supported the development of products aimed at improving outcomes for students with ASD. NCER may also support projects focused on students with disabilities under their Postsecondary and Adult Education research topic, though no studies focused on ASD have been funded to date under this program. Office of Special Education and Rehabilitative Services (OSERS) The mission of the Office of Special Education and Rehabilitative Services (OSERS) is to improve early childhood, educational, and employment outcomes and raise expectations for all people with disabilities, their families, their communities, and the nation. Office of Special Education Programs (OSEP) The Office of Special Education Programs (OSEP) within OSERS is responsible for overseeing the administration of the IDEA. OSEP provides formula grants to states to make available early intervention services to infants and toddlers with disabilities and their families under IDEA Part C. OSEP also provides formula grants to states to assist them in providing a free appropriate public education in the least restrictive environment to children with disabilities, ages 3 through 21, under IDEA Part B. Through these formula grants, children with ASD are served as part of all infants, toddlers, and children with disabilities. Autism is one of the thirteen disabilities that is included in IDEA's definition of "child with a disability" in 20 U.S.C. 1401(3). OSEP also provides discretionary grants through IDEA's Part D national activities to improve education of children with disabilities, including some grants that have a focus on improving services for children with ASD. These grants are not specifically in place to implement the Autism CARES Act of 2019. Under Part D of the IDEA, OSEP funds discretionary grants to improve outcomes for children with disabilities and their families. These include grants in personnel development, technical assistance and dissemination, and parent training and information. OSEP funds some projects that are specific to children with ASD and some projects that develop products and provide services that are relevant to children with ASD, even though they do not focus specifically on ASD. Some examples are listed below. In mid-March of 2020, within one week of the vast majority of America's schools shifting to distance and hybrid education, ED marshalled its technical assistance resources to support children and families as they struggled with the new reality of distance education. OSEP led the effort to support the families of the nation's nearly seven million children with disabilities to address their unique needs. OSEP's strategy focused on the curation and dissemination of resources that addressed the provision of evidence-based instruction and creating/maintaining an environment conducive to learning. OSEP did not develop or disseminate resources specifically to support children with autism, with the exception of disseminating the AFIRM autism training modules that were accessed by over 200,000 new users during the pandemic. Given that 80% of children with disabilities spend at least 40% of their time in the general education classroom, OSEP collaborated with the Office of Elementary and Secondary Education (OESE) and the IES to curate, develop, and disseminate resources to support all children and families. Examples of activities undertaken by ED that supported families and addressed the needs of children with disabilities include: Rehabilitation Services Administration (RSA) The Rehabilitation Services Administration (RSA) is a component of the OSERS and provides leadership and resources to assist state and other agencies in providing rehabilitation and other services to individuals with disabilities, including those with ASD, to maximize their employment, independence, and integration into the community and the competitive labor market. While not specifically focused on health and well-being, RSA activities support employment and integration, part of the social determinants of health, and has a positive impact on the physical and mental health and overall well-being of individuals with disabilities, including individuals with ASD. Environmental Protection Agency (EPA) The U.S. Environmental Protection Agency (EPA) aims to protect human health and the environment through such activities as the development and enforcement of environmental regulations, the support of grants and laboratories for scientific research, and the publication of materials for public access. EPA works to ensure that all parts of society have access to accurate information sufficient to effectively participate in managing human health and environmental risks. EPA-funded research and activities broadly impact the health and well-being of individuals with disabilities, including those with ASD, and their families. The goal of the Children's Environmental Health and Disease Prevention Research Centers (Children's Centers), an extramural grant program jointly funded by the EPA and NIEHS, is to understand how environmental factors affect children's health and promote translation of basic research findings into intervention and prevention methods to prevent adverse health outcomes. The 2013 EPA Children's Centers award to University of California (UC), Davis was funded under EPA's Science to Achieve Results (STAR) grant program and focuses on environmental risk factors for ASD and developmental delays. Specifically, the UC Davis center studies the epigenetic mechanisms of toxicant exposure on immune function, develops and applies new biomarkers of autism risk, characterizes the potential health effects of environmental exposures and various life stages, and predicts long-term clinical and behavioral consequences. The environmental chemicals that this center examines with regard to ASD include polybrominated diphenyl ethers (PBDEs), perfluorooctanoic acid (PFOA), perfluorooctanesulfonic acid (PFOS), and pesticides. Several notable research findings have resulted from this project. Children's Centers researchers have identified potential links between air pollution, pesticides, occupational exposures, phthalates, and risks of ASD. This project was funded through FY 2019. The EPA also provides funding to the Agency for Toxic Substances and Disease Registry (ATSDR), under an interagency agreement, to support 10 Pediatric Environmental Health Specialty Units (PEHSUs). PEHSUs provide medical information and advice on environmental conditions, including working with health care professionals, parents, schools and community groups, and others to provide information on protecting children and reproductive-age adults from environmental hazards. PEHSUs offer advice on prevention, diagnosis, management, and treatment of environmentally related health effects in children, which may include ASD. Extramural grants funded by the EPA that impact the health and well-being of individuals on the autism spectrum include grants on the Multiplexed human BrainSphere Developmental Neurotoxicity Test for Six Key Events of Neural Development (R839505) and the Integrated blood brain barrier - computational model development to predict doses of concern for compound linked neurotoxicity (RD840027). Department Of Housing And Urban Development (HUD) The Department of Housing and Urban Development (HUD) works to strengthen the housing market in order to bolster the economy and protect consumers, meet the need for quality affordable rental homes, utilize housing as a platform for improving quality of life, and build inclusive and sustainable communities free from discrimination. HUD-funded activities broadly impact the well-being of individuals with disabilities, including those with ASD, and their families. HUD administratively enforces several civil rights laws prohibiting housing discrimination, including the Fair Housing Act, Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act (ADA). With few exceptions, the Fair Housing Act covers housing throughout the country. Section 504 of the Rehabilitation Act Section 504 provisions apply to recipients of HUD financial assistance, including the Community Development Block Grant, Public Housing, Multifamily, Housing Choice Voucher, and other programs. HUD's Section 504 regulations (at 24 CFR § 8.4c) permit exclusion of persons without disabilities from the benefits of a program if the program is limited by federal statute or executive order to individuals with disabilities and also permits exclusion of a specific class of individuals with disabilities from a program if the program is limited by federal statute or executive order to a different class of individuals. However, HUD does not have disability-specific programs, such as housing specifically for persons with ASD. Section 811 Supportive Housing for Persons with Disabilities The HUD Section 811 program provides funding to develop and subsidize rental housing with the availability of supportive services for very low- and extremely low-income adults with disabilities. The program supports two major types of assistance: (1) capital grants and project-based rental assistance for nonprofit developers to build, rehabilitate, or acquire small group homes or scatter site housing units with the availability of supportive services for very low-income persons with disabilities and (2) project-based rental assistance for state housing agencies in partnership with state Health and Human Services/Medicaid agencies to provide housing for extremely low-income persons with disabilities with access to appropriate supportive services. In August 2020, HUD awarded over $74 million in grants to 12 state housing agencies to support affordable rental housing for extremely low-income persons with disabilities. The awards will support up to five years of rental assistance for approximately 2,400 units of housing in buildings participating in project rental assistance through the Section 811 program. HUD also awarded $54.7 million in capital advance and project rental assistance grants to 15 community organizations through the Section 811 program. The grants were awarded to organizations who will create permanent supportive housing models that will be at the forefront of design, service delivery, and efficient use of federal resources. Awardees must promote long-term housing security and facilitate community integration of persons with disabilities. In 2020, HUD issued an eviction moratorium and offered additional funds to properties receiving project-based rental assistance under the Section 811 program, as part of the Coronavirus Aid, Relief, and Economic Security (CARES) Act. Housing Choice Voucher Program The Housing Choice Voucher (HCV) program is the federal government's major program for assisting very low-income families, older adults, and people with disabilities to afford decent, safe, and sanitary housing in the private rental market. HCVs are administered locally by public housing agencies (PHAs). Mainstream Voucher Program Mainstream vouchers assist very low-income adults with disabilities with tenant-based rental assistance. Participants receive a voucher and are free to choose any housing in the private rental market that meets the requirements of the program. Similar to the regular housing choice voucher, Mainstream vouchers are administered locally by PHAs. The 2017, 2018, and 2019 Appropriations Acts funded new Mainstream vouchers. Since 2018, HUD has awarded over $500 million in funding to PHAs to support 50,000 new Mainstream vouchers. Under the authority of the CARES Act, HUD allocated nearly $77 million for Mainstream vouchers in May 2020 and another $87 million in November 2020. Emergency Housing Voucher Program The Emergency Housing Voucher (EHV) is a special program available through the American Rescue Plan Act (ARPA) that will provide 70,000 housing choice vouchers to local PHAs. The program will assist individuals and families who are experiencing homelessness, at risk of homelessness, recently homeless, or victims of domestic violence, dating violence, stalking, sexual assault, or human trafficking. In 2021, HUD announced the award of the first tranche of ARPA funds for EHVs. Specifically, HUD awarded $1.1 billion - 70,000 vouchers - for 626 PHAs administering the HCV Program. HUD has additional special purpose voucher programs that serve people with disabilities: Public Housing Public housing was established to provide decent and safe rental housing for eligible low-income families, older adults, and persons with disabilities. Public housing comes in all sizes and types, from scattered single-family houses to high rise apartments for older adults. There are approximately 1.2 million households living in public housing units, managed by some 3,300 PHAs. Homeless Assistance Programs Homelessness assistance programs provide funding to states and local governments and nonprofit providers to serve individuals and families across the U.S. who are affected by homelessness. Department of Justice (DOJ) The U.S. Department of Justice (DOJ) ensures fair and impartial administration of justice for all Americans. DOJ-funded research and activities broadly impact the well-being of individuals with disabilities, including those with ASD, and their families. Within DOJ, the Civil Rights Division works to uphold the civil and constitutional rights of people with disabilities, including people with ASD and other DD. The Division coordinates the implementation and enforcement of Section 504 of the Rehabilitation Act and Title II of the ADA across the federal government. Section 504 of the Rehabilitation Act states that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under" any program or activity that either receives federal financial assistance or is conducted by any Executive agency or the United States Postal Service. Title II of the ADA requires that state and local governments give people with disabilities an equal opportunity to benefit from all of their programs, services, and activities (e.g. public education, employment, transportation, recreation, health care, social services, courts, voting, and town meetings). Title II covers all activities of state and local governments regardless of the government entity's size or receipt of federal funding. In response to the COVID-19 pandemic, the Civil Rights Division issued statements recognizing the impact of the pandemic on people with disabilities and reiterating its commitment to enforcing civil rights laws. The Educational Opportunities Section (EOS) of DOJ enforces anti-discrimination statutes and court decisions that impact students with autism in elementary and secondary schools and institutions of higher education, including, variously, the ADA, Section 504 of the Rehabilitation Act, the Equal Educational Opportunities Act (EEOA) (not post-secondary), Title VI of the Civil Rights Act, and Title IX of the Education Amendments of 1972, and upholds the rights of students under the 14th Amendment to the U.S. Constitution in educational settings. The Disability Rights Section (DRS) of DOJ administers and enforces the ADA to achieve equal opportunity for people with disabilities in the U.S. DRS has addressed the unnecessary segregation of people with IDD and expanded opportunities for people with IDD to work in competitive integrated employment. DRS has also addressed alleged discrimination by private schools and childcare centers against students with ASD on the basis of their disability. The Section also coordinates the implementation and enforcement of Section 504 of the Rehabilitation Act and Title II of the ADA across the federal government. Key concepts that are common to the Department's Section 504 and ADA regulations include reasonable modifications, program accessibility, and effective communication. The Special Litigation Section (SPL) of DOJ enforces Title II of the ADA, the Civil Rights of Institutionalized Persons Act, and 34 U.S.C. § 12601 of the Violent Crime Control and Law Enforcement Act of 1994. The Section's work has addressed conditions at health care facilities for individuals with disabilities, the rights of individuals with disabilities to live in their communities and not facilities, and the appropriate diversion of individuals with disabilities from the criminal justice system. The Office of Justice Programs (OJP) is a principle funding, research, and statistical component of the DOJ. It is a leading source of federal funding for state, tribal, and local criminal and juvenile justice agencies through six Bureaus and Program Offices. The DOJ OJP focuses on equipping and strengthening communities, justice systems, and other sectors through the dissemination of innovative and best practices, research, and statistics; grant funding and training and technical assistance; and fostering relationships. The Bureau of Justice Assistance (BJA) is a component of the OJP and helps make American communities safer by strengthening the nation's criminal justice system. Its grants, training and technical assistance, and policy development services provide state, local, and tribal governments with the cutting-edge tools and best practices they need to reduce violent and drug-related crime, support law enforcement, and combat victimization. Programs supported by the BJA are described below. History of National Partnerships and Today In 2013, BJA funded The Arc of the United States to create the National Center on Criminal Justice and Disability (NCCJD) to address challenges the justice system faces when it encounters people with disabilities in the areas of law enforcement, courts, and corrections. NCCJD's Pathways to Justice Initiative works to increase criminal justice professionals' capacities to respond to individuals with disabilities by providing training, technical assistance, and education. It brings together professionals from the disability and criminal justice fields to share their expertise and provides training, using a team approach, with the goal of becoming the go-to resource in their community or state on issues related to criminal justice and disability. In FY 2019, NCCJD, as a subrecipient of BJA's National Training and Technical Assistance (TTA) Initiative, increased its capacity to serve local jurisdictions by updating Pathways to Justice's curriculum and increasing the number of trainings available under the National TTA Initiative. NCCJD also initiated the creation of an Advanced IDD Module that incorporates IDD into crisis response for first responders. This new module was piloted with the District of Columbia Metropolitan Police Department and Baltimore County Police Department in recent months and continues to be developed. Additionally, NCCJD developed new content, namely several new fact sheets intended to raise awareness regarding the number of people with IDD encountering the justice system. These fact sheets are available through BJA's Police-Mental Health Collaboration (PMHC) Toolkit. Pathways to Justice is available to law enforcement agencies and district attorneys' offices through the Pathways to Justice website. Other training and technical assistance on disability response is currently available through BJA's portfolio of programming. The Law Enforcement-Mental Health Collaboration Support Center offers free training and resources to communities exploring ways to improve their law enforcement and service provider responses to people with behavioral health conditions or IDD. Through this center, community partners may request assistance through NCCJD in the areas of training and technical assistance, information and referral, resource collection and creation, and education. At present, NCCJD has provided five jurisdictions with individualized consultation. Webinars and Products Supported by BJA and Available through the Council of State Governments (CSG) Justice Center Upholding Kevin and Avonte's Law Kevin and Avonte's Law was enacted in 2018 to help protects individuals with autism or other DD who may wander away from safety. The law promotes initiatives that reduce the risk of injury or death related to the wandering characteristics of some children with autism. It amended the Violent Crime Control and Law Enforcement Act of 1994 and reauthorized the Missing Alzheimer's Disease Patient Alert Program. It allows DOJ grants to be used by law enforcement agencies and nonprofits for programs to: Kevin and Avonte's Law authorized BJA to support local efforts through the Reducing Injury and Death of Missing Individuals with Dementia and Developmental Disabilities Program. Following a competitive solicitation for proposals, BJA made funding available to selected local jurisdictions to reduce the numbers of deaths and injuries of individuals with forms of dementia, such as Alzheimer's disease, or DD, such as ASD, who, due to their condition, wander from safe environments. The program is intended to support and address public safety challenges by providing direct grants to health care agencies, law enforcement, public safety agencies, and nonprofit organizations in two categories. For Category 1, award recipients will implement locative technologies to track missing individuals. Category 2 award recipients will develop or operate programs to prevent wandering, increase individuals' safety, and facilitate rescue. Since February of 2020, BJA has made 29 awards throughout the U.S. to support local communities in responding to people in need of assistance. In FY 2019, An Academic-based Training Initiative to Improve Police Responses for People with Mental Illness and Intellectual and Developmental Disabilities was awarded to the University of Cincinnati. This program was awarded in February of 2020 (active through 2025) to enhance, pilot, train, support, distribute, and implement BJA's national crisis response curriculum, a 40-hour training program developed to prepare police officers in their response to people experiencing crises related to behavioral health disorders and cognitive/physical disabilities. This training, titled "Crisis Response and Intervention Training", was designed to complement the development and delivery of collaborative crisis response programs planned by law enforcement agencies and mental health/disability service providers in the community. This current cooperative agreement recipient will assist a new, competitively awarded cohort of site-based grantees, awarded through BJA's current funding opportunity, Collaborative Crisis Response Training Program, which closed July 20, 2021. Program applicants will plan a best practice program, including the newly revised 40-hour curriculum, and deploy a comprehensive strategy with the goal of a sustainable crisis response and intervention program for people with mental health issues and disabilities. Webinars and Products Developed with University of Cincinnati (FY19-21 Academic Training Project) The Academic Training to Enhance Police Engagement with People with Behavioral Health Issues and Developmental Disabilities is designed to enhance, implement, and evaluate crisis intervention team and disability response training for law enforcement and first responders that is academically based and transdisciplinary. BJA's Law Enforcement Mental Health Peer-to-Peer Learning Sites as a Resource in Response Through the CSG Justice Center and the International Association of Chiefs of Police (IACP), BJA makes 14 law enforcement learning sites available, free of cost, to local communities, to serve as training and technical assistance experts to increase and enhance collaborative responses for people with mental illness and IDD. BJA's national sites are the Arlington Police Department (Massachusetts), Houston Police Department (Texas), Los Angeles Police Department (California), Madison Police Department (Wisconsin), Madison County Sheriff's Office (Tennessee), Portland Police Department (Maine), Salt Lake City Police Department (Utah), Tucson Police Department (Arizona), and the University of Florida Police Department. BJA recently completed a national application process for additional host-agencies with mental health, behavioral health, and disability expertise. Five additional sites were added in May of 2021: Bexar County Sheriff's Department (Texas), Harris County Sheriff's Department (Texas), Miami-Dade County Police Department (Florida), Yavapai County Sheriff's Office (Arizona), and Wichita Police Department (Kansas). Although many law enforcement agencies train their officers to understand the needs of people with ASD, some states have moved towards passing legislation that makes training mandatory in local jurisdictions. States that currently have laws making training mandatory include California, New York, Maryland, and Pennsylvania. Resources to track these laws include the National Conference of State Legislatures (NCSL) State Trends in Law Enforcement Legislation: 2014-2017 and the National Down Syndrome Society (NDSS) Law Enforcement Training Toolkit. Department Of Labor (DOL) The U.S. Department of Labor (DOL) works to foster full access to gainful employment opportunities for all Americans, including youth and adults with disabilities. DOL also seeks to advance career pathways for youth and adults through its support for workforce development and job training programs, including apprenticeships. Employment is a key social determinant of health. Thus, DOL-funded activities carry key implications for the health and well-being of individuals with disabilities, including people on the autism spectrum, and their families. Federal Laws that Support Employment as a Social Determinant of Health The Rehabilitation Act and the ADA outline four core goals that shape the work at DOL to support full access to employment for youth and adults with disabilities. The four goals include ensuring economic self-sufficiency, independent living, full participation, and equality of opportunity. These four priorities relate directly to efforts to promote access to competitive, integrated employment and the attainment of health, wellness, and a high quality of life. The Rehabilitation Act especially has major implications for youth and adults on the autism spectrum because this law defines autism as a significant disability. Thus, improving opportunities to secure and maintain employment has received a key focus in federal policy and activities to support the health and wellness of people with disabilities, including youth and adults on the autism spectrum. The Family and Medical Leave Act (FMLA) enables employees to use up to 12 weeks of unpaid leave for circumstances that include supporting their physical and mental health and wellness. Employees can exercise their FMLA time to access health care services and supports that maintain their quality of life and ensure they can continue working in their jobs. Likewise, federal policy has emphasized the importance of independent living and related health focuses to attain, maintain, and advance in gainful employment opportunities and career pathways. The Workforce Innovation and Opportunity Act of 2014 (WIOA) includes provisions that re-authorize the federally funded Centers for Independent Living (CILs). The CILs provide five core services: independent living skill development, information and referral, individual and systems advocacy, peer support and mentoring, and postsecondary transition for youth with disabilities. Initiatives at the Office of Disability Employment Policy (ODEP) The Guideposts for Success: Framework for the Future to support all youth, including youth with disabilities, emphasize efforts to foster access to health care services. Developed for DOL's Office of Disability Employment Policy (ODEP), the Guideposts prioritize skills to navigate the health care system to access services for medical, mental health, and reproductive health needs. The Guideposts also stress that youth with disabilities attain the skills and knowledge needed to access self-care, make health care decisions, and engage in self-advocacy. ODEP is running a three-year, $2.1 million research project on Supporting Employment for Young Adults on the Autism Spectrum that recognizes employment as a key social determinant of health. Launched in FY 2021, this project seeks to learn practices, approaches, strategies, and policies to enhance and increase access to work-based learning and gainful employment for young adults on the autism spectrum. It also aims to identify ways to help propel career paths for young adult job seekers on the autism spectrum and support mental and physical health and wellness. This project emphasizes the inclusion of people on the autism spectrum who have diverse backgrounds, communication styles, and support needs for services. It informs ODEP's work to enhance policies and practices that drive access to gainful employment and career pathways for people with disabilities. Federal initiatives that interconnect health care and employment include the Retaining Employment and Talent after Injury/Illness Network (RETAIN), which was launched in 2018. The RETAIN demonstration projects facilitate the development of approaches and strategies for people to stay at work and return to work after an injury or illness. Funded by ODEP and the SSA, RETAIN has supported demonstration grants to eight state teams. The goals of the RETAIN initiative include ensuring retention of employment and participation in the labor force for people who acquire or may likely develop disabilities that inhibit their ability to work. RETAIN also focuses on decreasing long-term work absence; this emphasis includes reducing the need for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The RETAIN initiative is highly relevant for people on the autism spectrum: Research shows that many people on the autism spectrum have secondary conditions that can affect their physical and mental health and wellness. Additionally, people on the autism spectrum may meet the eligibility criteria for SSDI and SSI. In 2021, the RETAIN initiative awarded four-year, Phase 2 grants to five of the state teams from Phase 1 to build upon their success in supporting stay-at-work and return-to-work for people with disabilities. ODEP launched the Advancing State Policy Integration for Recovery and Employment (ASPIRE) initiative in 2020. ASPIRE seeks to support and expand access to competitive, integrated employment for people with mental health conditions. It assists seven states that are working to integrate their policies, programs, and funding systems to expand evidence-based mental health services for people with mental health conditions. ASPIRE emphasizes the use of best and promising practices, such as the Individual Placement and Support Model of Supported Employment. In addition to policy development work with states and federal agencies, ODEP disseminates a broad range of disability employment information and resources for employers through its website. ODEP's Topic Resource Webpage on Autism shares resources and information for employers, job seekers on the autism spectrum, service providers, policymakers, and transition-aged youth on the autism spectrum. Likewise, ODEP's website offers a Topic Resource Webpage on Mental Health and a Topic Resource Webpage on Health Care. DOL's Response to the COVID-19 Pandemic Since 2020, DOL has supported workers and job seekers as they navigated the COVID-19 pandemic and economic adversity. DOL has hosted a resource website on COVID-19 with information on workplace safety, employee rights, unemployment insurance, and paid leave under federal COVID-19 laws. ODEP has also provided resources and information to assist workers and job seekers with disabilities during the COVID-19 pandemic. For instance, the Job Accommodation Network (JAN), a technical assistance (TA) center funded by ODEP, has helped support workers, job seekers, service providers, and others during the COVID-19 pandemic. JAN has continued to offer free, expert, and confidential assistance on accommodations for both work and the job search; this assistance has included guidance on accommodations and supports for changes to work activities during the pandemic and shifts to teleworking or remote-based job training for some workers and trainees. It has also released tailored COVID-19 resources on: Likewise, the Employer Assistance and Resource Network on Disability Inclusion (EARN), ODEP's TA center for employers, has also issued COVID-19 resources on how to support workers with disabilities during the pandemic. EARN's COVID-19 resources have included: EARN also maintains a mental health toolkit to empower employers in supporting mental health in the workplace. Additionally, ODEP has released key resources for the COVID-19 pandemic that focused on inclusive apprenticeships, state and youth policies, and remote-based work. These resources released by projects at ODEP have included: National Science Foundation (NSF) The mission of the National Science Foundation (NSF) is to promote the progress of science; to advance the national health, prosperity, and welfare; and to secure the national defense. NSF is the only federal agency whose mission includes support for all fields of fundamental science and engineering, except for medical sciences. While NSF does not have an ASD research program, the agency has awarded numerous research grants through the years that include basic science research with implications for the health and well-being of individuals with ASD and other DD. These research awards, including current active awards, fall under a portfolio that emphasizes neuroscience, cognitive sciences, education and learning research, and workforce development. The NSF's award search website offers the public the opportunity to learn about specific NSF awards. Social Security Administration (SSA) The mission of the Social Security Administration (SSA) is to deliver quality Social Security services to the public. SSA administers two disability programs authorized under the Social Security Act - the Social Security Disability Insurance program (SSDI; Title II) and the Supplemental Security Income program (SSI; Title XVI). The SSDI program pays benefits to disabled individuals and certain family members if they are "insured," meaning that they worked long enough-and recently enough-and paid Social Security taxes on their earnings. SSI is a federal income supplement program funded by general tax revenues (not Social Security taxes) that is designed to help aged, blind, and disabled people who have little or no income by providing cash to meet basic needs for food, clothing, and shelter. These programs provide economic support toward the health and well-being of people with disabilities by helping to meet their basic needs. Under these programs, the SSA evaluates claims relating to ASD for both adults (aged 18-64 years) and children (aged 46 the authors found that a large and growing number of adults with autism receive SSI benefits. This finding underscores the importance of future research related to the economic security of adults on the autism spectrum. An additional study, which was produced by SSA staff in collaboration with Mathematica, a policy research and evaluation organization, was released in May 2021: Changing Stays? Duration of Supplemental Security Income Participation by First-Time Child Awardees and the Role of Continuing Disability Reviews. This article provides new evidence of the changing role of the SSI program for low-income children, including children with ASD, since 1997. The authors use administrative records from the SSA to identify new SSI awardees and track their histories in the SSI and SSDI programs. SSA has also undertaken several COVID-19-related activities that broadly target individuals with disabilities but would also benefit individuals with ASD. The COVID-19 pandemic has forced SSA to limit in-person appointments to critical need situations. Following this shift in operating posture, a substantial drop in the number of SSI applicants was observed. Many individuals—especially older adults and those with limited English proficiency—rely on in-person meetings to get the help they need. SSA stands ready to assist these groups with online and telephone services. Older adults wanting to apply for SSI payments must call the national hotline (800-772-1213). Those who are deaf or hard of hearing can call TTY 800-325-0778. SSA also provides free interpreter services in more than 150 languages. At the end of 2020, SSA began an outreach program for people currently receiving Disability Insurance benefits who could potentially be eligible for additional payments through SSI. These individuals received letters from SSA to notify them of their potential eligibility. The letter provided a phone number people could call for additional information and SSI eligibility screening. In addition, SSA joined with external partners to launch a new national outreach campaign. The goal of the campaign was to connect eligible individuals to SSI and SSDI benefits. The SSI and SSDI programs provide critical financial assistance, including life-saving access to health care and the Supplemental Nutrition Assistance Program in many cases. Key components of SSA's ongoing outreach campaign are: SSA also added an online informational page that specifically address COVID-19. Department of Transportation (DOT) The U.S. Department of Transportation (DOT) works to ensure transportation that is fast, safe, efficient, accessible, and convenient to improve the quality of life of people in the U.S. DOT-funded research and activities broadly impact the well-being of individuals with disabilities, including those with ASD, and their families. The DOT's Accessible Transportation Technologies Research Initiative (ATTRI) is a joint multi-modal, multi-agency initiative, co-led by the Federal Highway Administration, Federal Transit Administration (FTA), and Intelligent Transportation Systems Joint Program Office, with support from NIDILRR within HHS/ACL, and other federal partners. The ATTRI Program developed and implemented transformative applications to improve mobility options for all travelers, particularly those with disabilities. ATTRI research focuses on removing barriers to transportation for people with visual, hearing, cognitive, and mobility disabilities. Technologies and creative service models funded by ATTRI offer all Americans enhanced travel choices and accessibility at levels once only imagined. DOT has awarded application development funding for Wayfinding and Navigation, Pre-trip Concierge & Virtualization, and Safe Intersection Crossing, with NIDILLR awarding a grant in the Robotics and Automation technology area. Working together, the four technology areas provide the basis for an accessible transportation network that is far more economical, expansive, and welcoming than previously available, which is of increasing importance not only to travelers with disabilities but to all travelers in the U.S. A number of ATTRI technology sites explore different solutions, and applications are available to assist travelers with cognitive disabilities, including those with ASD. The National Rural Transit Assistance Program (RTAP) operates under a cooperative agreement between the FTA and the Neponset Valley Transportation Management Association, and its mission is to address the training and technical assistance needs of rural and tribal transit operators across the nation and to support state RTAP programs. The National RTAP provides technical assistance related to ASD and travel, including an Easterseals Project Action Consulting presentation during a session of the 2017 National RTAP Technical Assistance Conference and response to a recent technical assistance request for autism training for school bus drivers. On February 11, 2020, NIMH sponsored a free webinar which featured presentations by the National Center for Mobility Management and the FTA on transportation and mobility services for youth with autism transitioning out of high school. The webinar helped users leverage mobility resources and develop connections with transportation providers and services. Department Of Veterans Affairs (VA) The Department of Veterans Affairs (VA) is committed to fulfilling President Abraham Lincoln's promise "to care for him who shall have borne the battle, and for his widow, and his orphan" by serving and honoring the men and women who are America's veterans. As part of this commitment, the VA's Veterans Health Administration is currently serving 9 million enrolled veterans each year, including veterans with autism or other disabilities, through the largest integrated health care network in the U.S., with 1,255 health care facilities. In addition, the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA), a health benefits program which provides coverage to the spouse or widow(er) and children of veterans not eligible for TRICARE, allows ABA as a covered health benefit. There are currently two mechanisms for coordination of autism activities across the federal government: the Interagency Autism Coordinating Committee (IACC) and the National Autism Coordinator (NAC). This section describes recent activities of the IACC and the NAC that are related to improving the health and well-being of individuals with ASD. Interagency Autism Coordinating Committee (IACC) The Interagency Autism Coordinating Committee (IACC) was established in its current form by Congress under the CAA of 2006 (Public Law 109-416), and was most recently reauthorized under the Autism CARES Act of 2019 (Public Law 116-60), to provide advice to the HHS Secretary concerning issues related to ASD and to coordinate federal ASD-related efforts. Among other functions, the IACC develops and regularly updates a Strategic Plan for ASD, monitors federal and community ASD activities, and serves as a forum for public input on issues related to ASD. The Autism CARES Act of 2019 outlines requirements for the membership of the IACC, which includes representatives of federal agencies and public members from a variety of stakeholder groups within the autism community. Public membership includes autistic individuals, parents and legal guardians of children and adults on the autism spectrum, autism researchers, and leaders of national research, service, and advocacy organizations. Federal members of the IACC represent the following departments and agencies that address ASD research or services: Department of Health and Human Services (HHS) Department of Defense (DoD) Department of Education (ED) Department of Justice (DOJ) Department of Labor (DOL) Department of Veterans Affairs (VA) Department of Housing and Urban Development (HUD) Environmental Protection Agency (EPA) Social Security Administration (SSA) DOL, DOJ, HUD, and VA are new additions to the membership of the IACC under the Autism CARES Act of 2019. The IACC reconvened in July 2021 following a hiatus from March 2020 to July 2021 to allow for the appointment of new members to the Committee under the Autism CARES Act of 2019. The activities of federal agencies and private organizations to respond to the needs of the autism community in the wake of the COVID-19 pandemic was a top priority item, along with racial equity and health disparities in autism, which were both topics of discussion at the meeting that took place on July 21-22, 2021. The Committee will continue to discuss these and other issues related to the health and well-being of people on the autism spectrum in the future. The following are highlights of the activities of the IACC in 2018 and 2019 and of NIMH's Office of Autism Research Coordination (OARC), which coordinates and manages the IACC, in 2020 and 2021: IACC Full Committee Meeting Presentations At its full Committee meetings, the IACC regularly invites presenters to speak about topics of interest to the Committee and the broader autism community, including health and well-being. The goal of these presentations is to inform the IACC and the autism community about recent scientific advances, new research funding announcements and service programs, policy updates, and other important issues. Invited speakers include researchers, advocates, federal agency officials, and others. These presentations and their associated discussions highlighted areas of concern or progress relevant to the seven research priority areas of the IACC Strategic Plan and helped to inform the future strategic planning activities of the Committee. The topics highlighted at IACC meetings in 2018 and 2019 that are relevant to health and well-being of people on the autism spectrum include research on health disparities, early detection, employment, aggression and self-injury, wandering, disability financial planning, housing, health care, prevalence, communications technologies, and systems of care. Summaries of these presentations are included in the IACC Strategic Plan for ASD 2018-2019 Update. Archived videos of each presentation and the full slide sets are available on the IACC website. IACC Health Outcomes Working Group During the Autism CARES Act of 2014 authorization period, the IACC convened a Working Group on health and wellness issues for autistic individuals. In response, the IACC established the Working Group: Improving Health Outcomes for Individuals on the Autism Spectrum. The Working Group, composed of IACC members and invited external stakeholders with expertise in a variety of areas, was formed to gather information, discuss issues, and develop activities and recommendations for consideration by the full IACC. The Working Group focused their efforts on identifying the challenges people on the autism spectrum face pertaining to health and wellness, as well as co-occurring physical and mental health challenges. To begin to address these particular needs of the autism community, the Working Group met by conference call in 2018 and convened public workshops in September 2018 and May 2019. The September 2018 workshop addressed several of the most common physical health issues that are reported by the autism community as areas of concern and featured speakers who addressed the topics of epilepsy, sleep, gastrointestinal disorders, and patient-provider and health care services issues. The workshop also addressed the issue of health care transitions from pediatric to adult care and the needs for training for adult health care providers in autism, as well as approaches to increasing health literacy and advocacy within the autism community. A second workshop in May 2019 focused on the mental health issues experienced by individuals on the autism spectrum, including anxiety, depression, suicide, self-injurious behaviors, aggression, and mental health services. Highlights from these two workshops are summarized in the IACC Strategic Plan for ASD 2018-2019 Update. Additional working group materials, including archived workshop videos and meeting documents, are available on the IACC website. The IACC Working Group began work to draft a report on physical and mental health conditions affecting individuals on the autism spectrum and their families that will be continued and completed under the new Committee that convened in July 2021. IACC Housing Working Group During the Autism CARES Act of 2014 authorization period, the IACC voted to convene a working group to address housing concerns among individuals on the autism spectrum and their families. The goal of the Working Group was to research best practices on housing, review implementation of current federal regulations, and address housing issues faced by autistic individuals, including those with more severe disabilities. The Working Group convened in 2019, beginning with a conference call in June to discuss potential activities to improve housing issues. The Working Group decided to organize a workshop in July 2019 that would address the housing needs of people on the autism spectrum. The workshop included advocates in the community that have established different successful housing models for individuals with autism across the spectrum. A summary of presentations and discussions of this workshop is included in the IACC Strategic Plan for ASD 2018-2019 Update. Members of the IACC discussed the outcome of the workshop at the July 2019 full Committee meeting and decided that the issues highlighted will serve as an excellent base for the new IACC to consider further activities and action related to housing for people on the autism spectrum. OARC/NIMH-Sponsored Special Event: The Federal Response to COVID-19: Addressing the Needs of the Autism and Disability Communities The OARC sponsored a virtual event in April 2021 to discuss the impact of the COVID-19 pandemic on people on the autism spectrum and their families and the response of federal agencies. The event featured presentations from NIMH, CDC, ED, and DOL. Six autism community stakeholders from across the community engaged in a dialogue with the agency speakers. Discussion focused on the adverse impacts of the pandemic on mental and physical health as well as strategies for resilience and the emergence of innovations in areas such as telehealth and telework during the pandemic. Other topics discussed included efforts to ensure that people with disabilities are prioritized for vaccination, efforts to address the impact of the pandemic on students with disabilities, and programs to assist people with disabilities with employment challenges and access to employment opportunities during the pandemic. Efforts to address racial disparities across these areas was also a cross-cutting theme in this virtual event. The recorded event and slides are available on the IACC website. HHS National Autism Coordinator (NAC) The Autism CARES Act of 2014 required the designation of a National Autism Coordinator (NAC), "an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national ASD research, services, and support activities." The duties of the NAC include coordination and implementation of federal ASD activities, taking into account the IACC Strategic Plan, as well as ensuring that federal ASD efforts are not unnecessarily duplicative. The NAC accomplishes cross-agency and cross-departmental coordination in part through the activity of the Federal Interagency Workgroup on ASD (FIWA), an all-federal working group of representatives from the following federal departments and agencies: Department of Health and Human Services (HHS) Department of Education (ED) Department of Defense (DoD) Department of Justice (DOJ) Department of Housing and Urban Development (HUD) Department of Labor (DOL) Department of Transportation (DOT) Environmental Protection Agency (EPA) Social Security Administration (SSA) The NAC serves as the FIWA Chair. The goal of the FIWA is to work with the NAC to enhance internal coordination of federal ASD activities. This includes exchange of information across agencies regarding autism-related activities, ensuring progress toward implementation of IACC Strategic Plan recommendations, and coordination of federal reporting activities related to the Autism CARES Act. The FIWA has assisted with tracking the implementation of recommendations of the HHS Report to Congress on Young Adults and Transitioning Youth with Autism Spectrum Disorder, which was completed as required under the Autism CARES Act of 2014, and to determine what progress has been made in specific areas of transition-related work. The FIWA has also taken an active role in providing agency information for the development of this 2021 Report to Congress on the Health and Well-Being of Individuals with ASD. Transition-Aged Youth Webinar Series The OARC and the HHS NAC co-sponsored a series of webinars in FY 2020 in an effort to disseminate information and resources that address the needs of transition-aged youth and young adults on the autism spectrum. The first webinar explored the topic of transition from pediatric to adult health care and featured speakers from HRSA and Got Transition/The National Alliance to Advance Adolescent Health, as well as an autistic young adult and her mother discussing their experience. The second webinar addressed transportation and mobility options to support postschool transition. Featured speakers included an autistic self-advocate and representatives from the National Center for Mobility Management, Partners for Youth with Disabilities, and the DOT's Federal Transit Administration. The final webinar explored expanding career pathways for youth and young adults on the autism spectrum and the importance of employment to health, featuring a presentation from DOL's ODEP.
