Overview of Coverage Policies for Supportive Services for People with Autism

There are a range of supportive services in different areas that can enhance quality of life for individuals on the autism spectrum. Across the lifespan, many services are funded by Medicaid’s HCBS benefit. However, individuals may require additional supports in various areas, and alternate sources of support are needed for those who do not qualify or receive HCBS. It is estimated that the lifetime cost for an individual with autism without ID in the United States is $1.4 million, rising to $2.4 million for an individual with co-occurring ID.⁷ Approximately 79 percent of these costs are incurred by needed services, including non-medical services. As only some of these costs may be covered by federal benefits, private health insurance, and/or free government or community- based programs, there remains an obvious unmet need for ways to provide or support adequate, accessible, and cost-effective services to alleviate some of the financial and navigation strain on autistic individuals and their families.

While autism is a spectrum with various functional needs across individuals, all individuals who meet diagnostic criteria for ASD must have “clinically significant impairment in social, occupational, or other important areas of current functioning.”⁴ Although the need for supportive services is clear, these supports may vary from situational to comprehensive, and there is not always a clear pathway to ensuring that all of an individual’s support needs are met. This is in part due to the fact that autism can impact many different domains of functioning to different degrees, resulting in wide variation in the health and service needs from one individual on the autism spectrum to another. Some individuals may need few services and supports at different stages of their lives, while others may need many intensive services and supports throughout their lives. Thus, there is no single approach to service delivery that will satisfy the needs of all individuals on the spectrum. Supportive services may be obtained through a variety of sources: government-funded health insurance; private health insurance; out of pocket; federal, state, and local services programs; or grants and foundations. In some cases, services are offered based on functional needs, rather than clinical diagnosis. The types of evidence that are required for coverage may vary from one payor or service provider to the next. Individuals with autism and their caregivers often put a great deal of time and effort into piecing together a “patchwork” of supportive services through many different payors and providers in order to obtain adequate services and supports to address different areas of need. Even with this effort, needed services and supports can be lacking or missed due to unaffordability, unavailability, lack of knowledge about the services available, or the complexity of access. They often require assistance in connecting to additional specialists and resources and may pay for certain supportive services out of pocket, causing financial strain, or forgo needed services due to unaffordability or inaccessibility, exacerbating already significant health equity issues.

Adding to the complexity of supportive service needs is the fact that an autistic individual’s service needs are likely to vary and evolve at different points across the lifespan. Service providers, health professionals, educators, and direct support staff continually change across the lifetimes of people on the autism spectrum.⁵ Some services are targeted to young children, some to adolescents, some to adults, and some are relevant to all age groups. In addition, there are consequential changes in the expectations and legal responsibilities from childhood to adulthood that impact the types and focus of supports at different life stages.

In the United States, children with disabilities such as autism receive support from and are dependent on caregivers and systems of care that support their learning, such as the educational system. The IDEA, amended in 2004 as the Individuals with Disabilities Education Improvement Act, requires the provision of a free appropriate public education to all eligible children with disabilities ages 3-21 (depending on state law); the provision of early intervention services to eligible infants and toddlers with disabilities from birth to age 3 (or older depending on state law); and, in part, enables access to healthcare, nutritional, safety, and educational services, providing a core source of support across all communities. The role of supportive services for autism and other DD in childhood focuses on identifying and addressing challenges and building skills across key developmental domains, such as communication and learning. Early intervention services such as speech/language therapy and behavioral interventions can help infants and toddlers with disabilities learn motor, social, communication, and daily living skills. Research has shown that these types of services can greatly benefit a child’s development.^6-14 These services are critical, as earlier intervention has been associated with better outcomes later in life.^{15, 16}

Under IDEA Part C, young children do not need a diagnosis of autism to begin receiving federally mandated services for related developmental issues such as speech delay and other communication and behavioral difficulties. Children with disabilities who meet the eligibility criteria qualify for special education and related services provided through the IDEA,which includes individualized services for ASD. Medicaid is required to provide ASD-related coverage for certain services and are available to the public if they meet eligibility criteria.^{17, 18}

Some states offer Medicaid waiver programs, enabling states to waive the standard rules that apply to the Medicaid program to expand coverage or improve care for a target population. However, states differ in eligibility criteria for the waivers, how many people can enroll, and what services the waivers cover. ¹⁹ Some states’ Medicaid HCBS waivers provide services to eligible children with ASD or DD regardless of family income and in home and community-based settings rather than in institutional or other isolated settings.^{20, 21, 22} Research indicates that having choices in the selection of services and service providers, as well as control over the day-to-day provision of services, strengthens the impact of the waiver services for both children and their families.²³

As ASD affects individuals across the lifespan, many individuals on the autism spectrum receive supportive services as children and continue to need services through adolescence and adulthood.²⁴ As autistic individuals age into adulthood, a frequently noted disparity is the lower availability and access to supports and services compared to those for younger children and adolescents with autism.²⁵ Approximately 50,000 youth with ASD leave high school each year in the United States.²⁶ Needs for services such as speech/language therapy, one-to-one support, occupational therapy, medication management, and social skills training often go unmet following an exit from the educational system, as IDEA no longer applies after high school graduation or when an individual reaches the age of 22. The drop-off in services is typically referred to as the “services cliff.” Studies suggest that this drop-off in services may in fact begin to be experienced even before exiting high school, particularly for autistic individuals without co-occurring ID.²⁷ Research has found that individuals who were active users of services under IDEA receive far fewer services in adulthood, suggesting that many who may continue to need services in adulthood are not receiving them.^{28, 29, 30} Furthermore, studies indicate that Individualized Education Program (IEPs) for students with ASD in their final year of school may not be consistently meeting the standards outlined by law or best practice recommendations necessary for successful transition from high school to adulthood.^21-23

Transition to adulthood has a number of implications for individuals with disabilities who may have continuing needs for support in adulthood. After exiting the school system, individuals may receive government-funded health and financial support and assistance through Medicaid and/or Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), but there may be a considerable lag in access to services resulting from re-evaluation of eligibility for Medicaid at age 18 or loss of health insurance coverage under a parent’s health insurance policy at age 26.³¹ In addition, in the United States, 18 years of age is the age of majority, or legal adulthood, where a significant change in rights and responsibilities goes into effect, unless a person is deemed incapable of making sound self-care decisions through a legal process. This transition is a significant change where individuals are expected to become self-supporting and to be increasingly responsible for their own housing, safety, self-care, vocational, and other adult needs. Accordingly, the focus shifts from building skills and learning to the logistics of having a safe place to live and, ideally, an advanced education and vocational path along with opportunities for an engaged, healthy adult life. Individuals and families experience a divergence in what the future paths and support needs may be, and there is no longer a core source or highly-coordinated governmental system of supports such as was provided to individuals from birth through age 21. In addition, families have to transition from full-time care of a child to a new phase, which can involve facilitating growth towards adult activities and independence, and in some cases, this also means planning for lifelong supports, care, and succession planning. These dynamics add to the increasingly complicated efforts needed to navigate whatever services may be available from federal, state, and local sources. Many adult services are embedded into systems geared towards individuals with significant ID or are based on disability as defined by employment criteria. Many adults with autism, particularly those without ID, do not meet eligibility for the supports they may need to engage in employment or to support independence and daily living skills.

The adult service system is premised upon eligibility for services, usually due to significant functional or vocational limitations. Adults with autism and other DD become part of a larger “disability” community that also includes people with acquired disability due to injury, health conditions, or aging. The larger “disability” umbrella includes up to 26 percent of adults. Thus, adults with autism face service systems that are under increased demands and may have difficulty finding providers with experience in working with autistic individuals. Adults with autism who qualify for SSI may continue to receive Medicaid coverage. Medicaid also covers LTSS, including institutional care in nursing facilities and, in some cases, non-specialized placements for people with disabilities. In the past, Medicaid coverage was generally limited to those who needed institutional care in nursing facilities, but Medicaid HCBS allows beneficiaries to receive the care they need in their homes and communities. Beyond healthcare, many adults with ASD face challenges and barriers to accessing additional services, in areas such as employment and housing. Medicaid HCBS can help adults with ASD access these services by providing certain non-medical services, such as supported employment services and case management services that can help make connections to other supportive services (e.g., housing and food supports).

Depending on state policies, autistic adults who need services and supports may not be able to access them. While HCBS through the home health benefit are mandatory, additional Medicaid HCBS often depend on optional HCBS authorities such as 1915(c) waivers that require people to meet an institutional level of care. HCBS waivers allow states to limit how many people receive services, and limited waiver slots in states can also be a barrier to access. While not a true measure of unmet need as not all states screen for Medicaid eligibility prior to adding people to waiting lists, in 2021, 656,000 people across the United States were waiting for an available waiver slot.Different eligibility criteria and administrative procedures make accessing these services and supports challenging. Recent legislation has been passed in some states to decrease waiting times, but autistic adults and their caregivers continue to report unmet needs around functional skills training, employment or vocational services, housing supports, and mental and behavioral health services while waiting for HCBS.³²

The 2016-2017 Interagency Autism Coordination Committee (IACC) Strategic Plan for Autism Spectrum Disorder includes services and supports as a top priority: “Develop and implement high-quality, evidence-based, and widely accessible services and supports that maximize quality of life and health across the lifespan for all people on the autism spectrum and their families.” The scope and range of needed services is broad, and this report details the key types of ASD supportive services that may or may not be included in current coverage policies or through a variety of federal, state, and local programs. Through improved coverage, availability, and access, the opportunity to obtain high-quality services and supports will help to improve the health and well-being of individuals on the autism spectrum across the lifespan.