Summary and Conclusion

Autism affects an estimate of 1 in 44 children¹ in the United States and approximately two percent of adults.² In addition to the social and communication challenges experienced by people on the autism spectrum, some also have language or intellectual disabilities or co-occurring physical and mental health conditions. These co-occurring conditions can include epilepsy, GI, sleep, mental and physical health conditions. Specialized supportive services can help to improve skills and alleviate co-occurring conditions, promote and facilitate learning, preempt and/or address behavioral challenges, promote health, improve quality of life, and optimize independence over the lifespan.^{355, 356} Supportive services for people with autism include behavioral interventions, mental health services, speech/language therapy, physical therapy, employment services, social groups, advocacy training, and many more. Supportive services are also beneficial to the caregivers and family members of individuals with autism, including respite care, support and sibling groups, and family/systems navigation services.

This report provides an overview of the evidence base for positive outcomes linked to receipt of these services and many more. The report also includes information submitted by the Departments of Health and Human Services, Defense, Education, Housing and Urban Development, Justice, Labor, Transportation, and Veterans Affairs, as well as the Social Security Administration, on their specific programs and efforts in support of services for people with autism and/or disabilities. In this final section, the report provides a summary of the different pathways of coverage for services, as well as identification of ongoing areas of need.

Pathways to Coverage of Services for People with Autism

This report reviews several different pathways to obtaining coverage of services for people with autism. The types of services covered, duration, intensity, and eligibility requirements vary under different forms of coverage, which may further vary by state. Below, we provide a summary of the services coverage options available to individuals with autism and their families.

Medicaid, administered by CMs, is jointly operated between the states and the federal government. It provides healthcare coverage for individuals below certain income thresholds. Income and eligibility requirements can vary by state. The SSI program is an important Medicaid eligibility pathway for people with ID/DD. Most children enrolled in Medicaid receive services through a Medicaid health plan, such as a health maintenance organization (HMO) or other insurance company. The state Medicaid agency and the Medicaid health plan determines which services are “medically necessary” and which providers can be reimbursed for services. Services typically covered include case management, physical, occupational, and speech therapies, and ABA. The EPSDT Medicaid benefit mandates the provision of all medically necessary healthcare services found in section 1905(a) of the Social Security Act, including screening, diagnostic, and treatment services, to Medicaid beneficiaries under the age of 21.

When a child receives extended care in an institutional setting, Medicaid disregards family income as an eligibility requirement and makes the determination based solely on the child’s income. The Tax Equity and Fiscal Responsibility Act (TEFRA/Katie Beckett State Plan Option) of 1982 (PL No. 97-248, Section 134), makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who can safely be cared for at home, as long as it is cost neutral to the state to do so. Under TEFRA/Katie Beckett, states can disregard income eligibility requirements and provide Medicaid coverage if a child with a disability (including autism) requires a level of care that could be reasonably provided in a hospital, skilled nursing facility, or an intermediate care facility for individuals with ID. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA/Katie Beckett State Plan Option.

Head Start and Early Head Start programs are free, federally funded programs designed to promote school readiness for children from low-income families. Head Start and Early Head Start work closely with the IDEA Part B funded early childhood program and the IDEA Part C early intervention program. They cover children ages birth to age 5. These programs are required to serve children with special needs, which may include children with autism. Early Head Start programs offer services to infants with significant disabilities and their families. Families must apply in order to enroll their child in a Head Start Program.

Section 504 of the Rehabilitation Act of 1973 is a federal law designed to protect the rights of individuals with disabilities. Section 504 regulations require a school district to provide a FAPE to each qualified student with a disability who is in the school district's jurisdiction, regardless of the nature or severity of the disability. The Office for Civil Rights (OCR) of ED enforces Section 504 in programs and activities that receive federal financial assistance from the ED. OCR also enforces IDEA, which was first enacted in 1975 and most recently revised in 2004 as the Individuals with Disabilities Education Improvement Act (IDEA). IDEA extends the prohibition against discrimination to the full range of state and local government services, programs, and activities (including public schools) regardless of whether they receive any federal financial assistance. IDEA mandates that children with various disabilities, including autism, are entitled to a public education that meets their individual needs in the “least restrictive environment” possible. The IDEA provides states with federal grants to support early intervention programs. For children with autism younger than 3 years, early intervention services, such as speech therapy, ABA, occupational therapy, physical therapy, and family training can be received through these programs. For children 3 years and older, special education services are provided by the local school district through their special education department. School-based services are available until children graduate from high school and based upon the unique needs of the individual. These services may include supports such as speech therapy, occupational therapy, physical therapy, academic tutoring, behavioral supports during the school day, peer-to-peer mentoring, and transition services. A student’s IEP describes the needs of the child and how these needs will be met within the context of the school district.

Waiver programs are used to deliver some kinds of services for people with disabilities. A waiver program approved by the CMS allows states to waive certain provisions to allow Medicaid services to be delivered in a different place, to people with different needs, or different income levels. Nearly all states and the District of Columbia offer HCBS Medicaid Waivers, which are fee-for-service programs.

These must follow federal guidelines and are available to people who prefer to get long-term care services and supports in their home or community, rather than in an institutional setting. State HCBS Waiver programs must: 1) Demonstrate that providing waiver services won’t cost more than providing these services in an institution, 2) Ensure the protection of people’s health and welfare, 3) Provide adequate and reasonable provider standards to meet the needs of the target population, and 4) Ensure that services follow an individualized and person-centered plan of care. States can waive certain Medicaid program requirements under HCBS Waivers, including comparability of services criteria and income eligibility requirements. States can offer a variety of autism services under an HCBS Waiver program, such as intensive individual support services, respite care, and adult life planning.³⁵⁷ HCBS Waivers can help to meet the service needs of people with autism and decrease their unmet healthcare needs.^358-360 Further, having choices in the selection of services and service providers, as well as control over day-to-day provision of services, strengthens the impact of the waiver services for both individuals and their families.³⁶¹ In light of the heightened demand for autism services and long waiting lists, some states developed waivers specifically for children with ASD; the development of adult autism-specific waivers are less frequent.^{355, 362-364} This website provides a complete list of Medicaid waivers for each state.

If a family earns too much to qualify for Medicaid and their child is not covered under a group health plan or other creditable health insurance, publicly funded health insurance may be obtained through CHIP. CHIP is administered by states, according to federal requirements. The program is funded jointly by states and the federal government. Every state administers its own CHIP program with broad guidance from CMS. Coverage for ABA and other autism services varies by state.

An additional way for families and individuals to pay for autism supportive services is through the Achieving a Better Life Experience (ABLE) Act. The ABLE Act was signed into law on December 19, 2014. The ABLE Act amended the federal tax code to allow families the opportunity to set up tax-exempt 529A savings accounts for disability-related expenses. Account funds are generally not considered for the SSI program, Medicaid, and other federal means-tested benefits. ABLE accounts enable people with autism and their families to save for housing, education, transportation, medical and other expenses related to their disability. This allows individuals with disabilities, including autism, to save for their future needs without losing access to other resources. Forty states, including the District of Columbia, offer ABLE programs.

The SSDI and SSI programs are also available to provide assistance to people with disabilities. The SSDI program pays benefits to the disabled individual and certain family members. Everyone eligible for SSDI benefits is also eligible for Medicare after a 24-month qualifying period. In addition, the SSI program provides financial assistance to meet basic needs for food, clothing, and shelter to adults and children with disabilities who have limited income and resources and is funded by general tax revenues. In most states, SSI recipients qualify for Medicaid.

For U.S. services members, retirees, and their families, TRICARE covers many services for beneficiaries with autism. These include occupational therapy, physical therapy, physician services, psychological services, psychological testing, prescription drugs, and speech therapy. TRICARE covers ABA for all eligible beneficiaries diagnosed with autism through the TRICARE Comprehensive Autism Care Demonstration (ACD). To qualify for the ACD, active duty service members must enroll in the Exceptional Family Member Program (EFMP) and register in the Extended Care Health Option (ECHO). In addition, the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA) is a health benefits program that provides coverage to the spouse or widow(er) and children of veterans not eligible for TRICARE. CHAMPVA allows ABA as a covered health benefit.

Individuals with autism and their families also have the option to obtain private insurance coverage through health insurance plans run by private insurance companies. Based on data from the 2019 National Survey of Children’s Health, a recent study estimates that about 44 percent of children with ASD are covered by private insurance.³⁶⁵ For working-age adults with disabilities, health insurance was dramatically improved by insurance expansions driven by the Affordable Care Act in 2014. However, it is possible that the COVID-19 pandemic has resulted in disruptions to employment that have impacted private insurance coverage. By 2019, all 50 U.S. states had enacted private autism insurance mandate legislation requiring coverage of autism-related services. Forty-seven of these states clearly specify coverage for ABA in their mandates.³⁶⁵ On their website, the National Conference of State Legislators provides detailed information about insurance coverage state laws as they specifically pertain to people with autism. The intent of private insurance mandate legislation was to cover a larger breadth of services that include medically necessary services available for the treatment of ASD. Despite these mandates, studies indicate that many privately insured children with ASD are primarily treated through publicly funded systems.^366,367

Federally Funded Programs and Research on Services for People with Autism

As reviewed in this report, there are many examples of federal activities focused on services and supports for individuals on the autism spectrum and their families:

• The Administration for Children and Families (ACF) Office of Head Start (OHS) maintains the disabilities services section of the Early Childhood Learning and Knowledge Center website, which provides evidence-based resources such as the Disability Services Coordinator Orientation Guide.
• The Administration for Community Living (ACL) funds programs in all states and territories that support individuals with autism in a variety of ways, including areas such as social skills, transportation, employment, and caregiver supports (programs vary by state).
• The Centers for Medicare & Medicaid Services (CMS) administers Medicaid and CHIP.
• The Health Resources and Services Administration (HRSA) funds the State Public Health Coordinating Center for Autism (SPHARC), which provides technical assistance and supportive services for autism in a variety of areas.
• The Indian Health Service (IHS) provides education, training, consultation, and resources to clinicians treating patients with neurodevelopmental disorders, including ASD, through the IHS Indian Children’s Program (ICP).
• The Substance Abuse and Mental Health Services Administration (SAMHSA) funds block grants that can support a broad array of services for children with mental health conditions, including autism.
• The Office of Special Education Programs (OSEP) within the Department of Education (ED) is responsible for overseeing the administration of IDEA, through which many children with autism receive early intervention services and special education and related services.
• The Rehabilitation Services Administration (RSA), within the Department of Education (ED), provides leadership and resources to assist state and other agencies in providing vocational rehabilitation and other services to individuals with disabilities, including those with ASD, to maximize their employment and independence.
• The Department of Housing and Urban Development (HUD) 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 Bureau of Justice Assistance within the Department of Justice (DOJ) provides free technical assistance to organizations such as non-profit behavioral health organizations, criminal justice agencies, and service providers on responding to people with intellectual and developmental disabilities.
• The Department of Labor (DOL)'s Office of Disability Employment Policy (ODEP) conducts policy development work with states and federal agencies to support the integrated employment of people with disabilities.
• The Department of Transportation (DOT) has developed and implemented transformative applications to improve mobility options for people with disabilities.
• The Social Security Administration (SSA) administers two disability programs authorized under the Social Security Act; the SSDI and SSI.
• The Department of Veterans Affairs (VA ) delivers healthcare to the more than nine million enrolled veterans each year, including veterans with autism or other disabilities, Veterans Health Administration, in addition to the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA), which allows ABA as a covered health benefit.

Federal departments and agencies are also funding research efforts related to the provision of supportive services and interventions for individuals with autism:

• The Office of the Assistant Secretary for Planning and Evaluation (ASPE) within the U.S. Department of Health and Human Services (HHS) has several ongoing projects that provide analysis of service utilization by people with disabilities, including autism.
• The U.S. Department of Defense (DoD) Autism Research Program (ARP) is funding research on interventions promoting success in key transitions to adulthood and healthcare provider-focused training or tools to improve healthcare delivery for individuals with ASD.
• The Defense Health Agency (DHA) has been working with the Congressionally Directed Medical Research Program (CDMRP) to better understand the impact of ABA services for people with autism.
• The National Institutes of Health (NIH) supports work to connect families to resources when they first receive a diagnosis through the Autism ACTION Network, as well as the ASD Pediatric Early Detection, Engagement, and Services (PEDS) Network, which has a number of service-related research projects currently underway.

Ongoing Areas of Need

As reviewed above, there are numerous ongoing service-related federal efforts and multiple pathways to obtaining coverage of certain services for children and adults with autism. Coverage and the services received is affected by the insurance policies in place at the state (i.e., HCBS waivers, insurance mandates) and federal level (i.e., Medicaid, CHIP), an individual’s or family’s ability to spend out-of-pocket, as well as their familiarity with and comfort level with navigating the service system.^368,369,370 The difficulty of obtaining coverage for supportive services is further compounded by the fact that different rules are instituted in different states, which may have different eligibility criteria, age caps, and dollar limits. This complexity is well illustrated by the eligibility requirement of a formal diagnosis for receipt of certain services; documentation of a diagnosis that is useful in one context may not meet eligibility requirements in another context, and different states and programs may have different requirements. This can be a major stumbling block for many families. Certain supportive services may only be covered once they have cleared a time and resource-intensive review to establish a base of efficacy, but this does not reflect the full range of services that are being used by members of the autism community. Future research is needed to establish the evidence base of efficacy for some of the services that individuals are currently using and find helpful in their daily lives and in alleviating co-occurring conditions. Some of these services are not covered by health insurance or federal or state benefits and can only be accessed by paying out of pocket.

Family Navigation

The complexity of the supportive services landscape points to one important area of need: family navigation supports to help families identify and coordinate care among the various providers, service types, and forms of coverage. Services are often fragmented among many different providers and in some cases, families may not be aware of the types of supports that are available to them. Families who are already facing significant functional impairments and disability- associated life stressors may have to shoulder additional burden of navigating complicated gate-keeping requirements before even identifying whether appropriate supports and services are actually available in their community. In some instances, providers may receive conflicting guidance on whether or not they are able to serve a person with autism, or if they should be referred to other services specific for those with DD. As a result, autistic individuals’ co-occurring conditions, such as mental health conditions, may go unaddressed. Family navigation services have been found to be effective in improving access and adherence to services over time,³⁷¹ but tools designed specifically for families following a diagnosis of autism are currently limited.³⁷² To be offered starting in October 2022, a new Medicaid health home benefit for children with medically complex conditions is a step towards meeting this need. This benefit will help state Medicaid programs provide person-centered care management, care coordination, and patient and family support. Fragmentation of the service system may be further improved by enhanced “wrap-around” or “continuum of care” services. Wrap-around services refer to the practice of providing all the various services that an individual may need over time across different areas in their life (e.g., home, school, community). Wrap-around service delivery is a team-based, collaborative case management approach where a number of professionals work together to provide a holistic program of supports. This coordinated approach can help to improve outcomes for individuals and their families.^373,374

Consistency of Coverage

Given the different forms of coverage for autism-related services, researchers are beginning to evaluate whether the type of healthcare coverage has an impact on the services an individual receives. A recent study found that privately insured children with autism are less likely to have health insurance plans that covered a fuller range of needed services compared to children with federally funded health insurance.³⁷⁵ Additional work has found that children with ASD enrolled in Medicaid were more likely to have visits to occupational therapists, physical therapists, and behavioral therapists compared to children with private insurance.³⁷⁶ Furthermore, research indicates that children with ASD-related HCBS waivers are more likely to have outpatient visits and less likely to have inpatient visits and long-term treatment than children without HCBS waivers.²⁰ A recent scoping review found preliminary evidence that HCBS waivers for people with IDD benefit states economically, reduce unmet healthcare needs, increase parental ability to continue working, and reduce racial disparities in care access.³⁷⁷ Further research in this area is needed in order to ensure consistency of care and services received by individuals with autism and their families.

Workforce Shortages

A significant barrier in accessing services is the short-age in the workforce of direct support professionals (DSPs). Autistic individuals and their families face difficulties in accessing providers with expertise in working with people with autism and sufficient training in related areas, such as AAC.^378-381 DSPs support people with disabilities to participate fully in their communities, in areas such as caregiving, support with daily activities of living, mobility assistance, accessing resources, emotional support, and employment support. Because of these shortages, families may have to drive long distances to see providers and may experience delays or gaps in access to therapies and services.

Despite rising demand for DSPs, it is estimated that the median wage for direct care is approximately $13.00 per hour, with a significant proportion living below the federal poverty level and almost half relying on some form of public assistance.^382-383 DSPs are faced with a physically and emotionally demanding workload with limited training and inadequate supervision, leading to low job satisfaction and high rates of turnover. In 2018, 14 percent of DSPs reported not having health insurance and 71.3 percent reported having their own medical debt. Addressing these issues within the DSP profession would greatly improve the availability of supportive services for people with autism of all ages.

More training programs for service professionals in every service field would be helpful in addressing shortages. For example, there is a need for increased training for those involved in the provision of mental health services to address the unique needs of people with autism. An enhanced workforce focused on preventative care could help to reduce the number of individuals with autism who may not access services until they are in acute or crisis care.^384,385 Federal agencies such as HRSA and ACL fund programs to provide training for direct support professionals, but more programs and program capacity are needed to meet the growing needs of the autism and disability communities.

Diagnostic Services

As reviewed earlier in this report, an additional area of ongoing need is the long gap between referral and diagnostic assessment. Long waitlists have resulted in a two-year difference between the earliest signs of ASD and the average age of diagnosis,³⁹ with minoritized populations waiting even longer to be evaluated.⁴⁰ Shortages in healthcare providers in underserved geographic areas, time-consuming evaluations, and the high cost of care contribute to disparities in diagnosis.³⁸⁶ Individuals attempting to obtain a diagnosis in adulthood also experience long wait times. A survey of 77 adults diagnosed with ASD found that participants were self-diagnosed for an average of 3.25 years before they received a formal diagnosis.³⁸⁷ Self-diagnosis can be problematic because it relies on information available on the internet, which may not be accurate and lead to misdiagnosis, unrealistic expectations for treatment, increasing anxiety, and promoting distrust of professionals.³⁸⁸ However, the dearth of providers who can accurately diagnose autism in adults make it difficult for individuals who suspect they may be on the autism spectrum to access diagnostic services.³⁸⁹ Medical home models, a tiered system of develop-mental screening and early ASD evaluation, and other clinical models have been tested to reduce the gap between referral and diagnosis.^390-393 Recent developments leveraging new technologies in telemedicine can also help to remediate these problems and increase access to diagnostic services.³⁹ Further research is needed to establish the validity of diagnostic assessment through telehealth tools for children and adults and train and increase the number of service providers across a range of geographical and socioeconomic settings to connect individuals to timely diagnostic services.

Waitlists for Services

People in need of HCBS often face barriers to accessing services, such as long waitlists for Medicaid HCBS waiver slots. HCBS allows states to limit how many people receive services and states may manage costs by limiting services to a finite number of beneficiaries which as noted earlier, can create a barrier to access. It is estimated that individuals with ID/DD spend 48 months on a waiting list before enrolling in a Medicaid HCBS waiver. Parents of children with autism cite long waitlists as a top concern in obtaining services.³⁹⁴ For adults with autism, a recent study found that the waiting list for receiving HCBS through Medicaid is months long, resulting in unmet needs for functional skills supports, employment or vocational services, housing supports, and mental and behavioral health services.³⁹⁵ It is important to note that while 656,000 people across the United States were reported to be on waiting lists in 2021, this is not a true indication of unmet need as not all states screen for Medicaid eligibility prior to adding people to waiting lists and over half of people on waiting lists for HCBS may not be eligible to receive those services. Recent legislation has been passed in some states to decrease waiting times (e.g., Maryland), but further targeted efforts may be required to meet increasing demand and reach particularly underserved populations, including minority racial/ethnic groups, individuals who may be more isolated, and as they age away from the supports provided throughout childhood and adolescence.³⁹⁵

The Services Cliff

Aging out of the supportive services system provided in schools under IDEA and under Medicaid’s EPSDT benefit is a top concern for individuals with autism and their families. Most individuals will continue to need some types of services or supports in adulthood, but many do not qualify for adult services.²⁶ This is often described as “falling off the services cliff,” referring to the dramatic decline in access to services during the transition to adulthood.³¹ It is estimated that approximately 26 percent of young adults on the autism spectrum receive no services – services which could help them become employed, continue their education, or live more independently.²⁶ As individuals with autism progress into adulthood, there are a variety of areas and challenges that could be improved through increased coverage for supportive services. These include unemployment, under-employment, economic vulnerability, and premature mortality.^396,397 Compared to their peers with other types of disabilities, young adults with autism have the lowest rate of employment, at 58 percent.²⁶ People who are unemployed are at risk of “falling through the cracks” in healthcare coverage and not receiving the services they need. The disconnect between the mental health and DD services systems increases the likelihood of individuals “falling through the cracks”; because mental health services are based around serious mental illness, people with autism are often not eligible unless they have a diagnosed co-occurring mental health issue. Furthermore, DD services are often based on ID and IQ, and a person with autism who does not qualify based on those criteria thus would not be eligible to receive those supportive services. Autistic adults also face many barriers in accessing appropriate physical healthcare.³⁹⁸

Services for Older Adults

Further research is needed to identify and understand the full range of health and social support services needed by older autistic adults in areas such as continued support related to autistic traits, co-occur-ring mental health difficulties and physical health challenges, communication, social connection, daily living skills, and long term supports in the absence of family caregivers or adequate long term planning.^399-401 While there are many existing programs providing services and supports for older adults with disabilities, research and evaluation are needed to determine if those services and supports need to be adapted to meet the specific needs of autistic individuals. As many older autistic adults may not actually be diagnosed, having services that are adapted to meet the functional needs of a broad range of individuals, including autistic individuals, is especially important to help ensure that each individual will be able to receive appropriate services that correspond to their needs.

Racial, Ethnic, and Geographic Disparities

Racial, ethnic, and geographic disparities in autism are well-established,⁴⁰² with many disparities present in areas related to service provision and accessibility.⁴⁰³ Family- and neighborhood-level socioeconomic status (SES), as well as racial and ethnic minority status, are strongly related to disparities in access to quality autism care.⁴⁰⁴ Families living in low-SES neighbor-hoods and rural areas are more likely to be located in a service “desert,” areas of low service availability and fewer providers.⁴⁰⁵ Research has found that Black and minoritized families with autism are not as quickly enrolled in services in the first years of life following a diagnosis,^406,407 and non-white children in general are diagnosed, referred, and screened later than their white peers, resulting in delayed onset of treatment.⁴⁰⁸ Minority families are also under-represented in evidence-based treatments and services in autism.^{406, 409, 410} Language barriers have been noted as a factor in the lower number of hours of direct services received by non-English speaking families compared to English-speaking families.⁴¹¹ For example, a substantially lower percentage of Latino children receive school-based occupational therapy and physical therapy as compared with non-Latino white children.⁴¹² Additional research is needed to improve access to supports and services for families from diverse backgrounds and for whom English is not their primary language. Further, there is a need to increase cultural competency among service providers ⁴¹³ and consider diverse experiences, preferences, and values in the design and provision of autism services for families and their children.⁴¹⁴

Impacts of COVID-19

Lastly, it is important to acknowledge the known and unknown impacts of the COVID-19 pandemic on the services and supports of people with autism and other disabilities. A recent report found that fewer disability benefit claims were filed during the pandemic, as well as claims by certain vulnerable populations.⁴¹⁵ People with disabilities experience systemic inequities in healthcare access, social determinants of health, morbidity, and mortality compared to people without disabilities.⁴¹⁶ The COVID-19 pandemic exacerbated existing inequities for people with disabilities, who have been disproportionately impacted with increased infections, hospitalizations, and death, in addition to interruptions in essential services and supports and social isolation. At the same time, the pandemic ushered in rapid policy and service adaptations that increased accessibility for some, such as through the use of telehealth.

The paragraphs above briefly review areas of ongoing need and opportunity in the realm of supportive services for individuals with autism. Further in-depth detail and research can be found in the IACC Strategic Plan for Autism Spectrum Disorder, which outlines priority areas for enhanced research, services, and policy issues.

Conclusion

Individuals with autism have complex medical, behavioral, educational, and social service needs. Because the combination and degree of characteristics can differ greatly from one individual to another, there are many diverse service needs among the autism community. Often services are provided through a range of government agencies and providers that frequently require integration and collaboration between healthcare, education, employment, and social support sectors.^417-418 As reviewed in this report, there are multiple pathways to obtaining service coverage and numerous federal programs and efforts underway related to autism services. Despite these efforts, available funds are limited and individuals and families may be unable to access or afford the full scope of services that could help to improve their health and well-being or that of their loved one in all relevant areas. Often a “patchwork” of service provision and coverage is needed in order to begin to meet the service needs of an individual. Navigating the requirements among different options for eligibility and coverage can be challenging.

A heightened focus on diversity, equity, inclusion, and accessibility across public and private sectors has opened the doors to opportunities for considering ways to improve equity of supportive services access and quality, as well as inclusion of people with autism and other disabilities across many segments of life. In addition, many autistic adults have become actively engaged in advocacy and have expanded disability rights to include neurodiversity and have pushed service providers and researchers to truly include their perspectives, experiences, and interests. Both in the United States and across the globe, the rights and inclusion of people with disabilities has taken on key importance in health equity with a call to support each person in their strengths and challenges through services and supports that enhance quality of life.

As described in the recent 2021 Report to Congress on the Health and Well-Being of Individuals with Autism Spectrum Disorder, the Federal Interagency Workgroup on Autism (FIWA) developed recommendations to improve the health and well-being of individuals on the autism spectrum. Several of these recommendations specifically focused on services, including, increased federal coordination in providing services and supports; optimized behavioral and other therapeutic interventions; and recognition of caregiver mental health and support needs. Coupled with the information provided in the present report, these recommendations highlight the ongoing need for improvements in supportive service quality, coverage, and delivery. Moving forward, coordination of federal activities, service providers, and engagement with the autism community through avenues such as the IACC, the activities of the National Autism Coordinator, and federal partnerships with state and local governments and private organizations will continue to play critical roles in ensuring that federal departments and agencies are able to be responsive to the evolving needs of the community and emerging opportunities to improve supportive services for people on the autism spectrum and their families.