Abstract

When establishing eligibility for developmental disability (DD) services, definitions of specific diagnostic conditions, such as autism, impact policy. Under the Medicaid home and community-based waiver program, states have discretion in determining specific program or service eligibility criteria, the nature of supports to be provided, and the number of individuals to be served. Individuals with DD, their families, and advocates have pushed to expand eligibility and improve the quality of services and supports received. This article uses a California legal case to explore the impact on individuals seeking eligibility for DD services when states rely on evolving diagnostic criteria for autism spectrum disorder. Recommendations are made for a more equitable and consistent approach to disability eligibility determination.

Services for individuals with autism may be available through the healthcare, early intervention, developmental disability (DD), special education, and/or mental health system, depending on the state. Many of these systems rely on the definition of autism codified in the Diagnostic and Statistical Manual of Mental Disorders (DSM) by the American Psychiatric Association (APA) as part of the basis for eligibility decisions. This article uses a California legal case (Brian S. vs. Terry Delgadillo and San Andreas Regional Center, 2010) to illustrate challenges in using DSM definitions of autism spectrum disorder (ASD) as a basis for determining eligibility of individuals with ASD. Brian S. was denied eligibility for DD services because he was diagnosed with Asperger‘s disorder and not autistic disorder—the court determined that the term “autism” in the California DD statute did not include the full spectrum of autism disorders in the DSM-IV-TR, which was current at the time of the trial (4th ed., text rev.; American Psychiatric Association [APA], 2000). The authors were part of a team of professionals representing the disciplines of law, pediatrics, psychiatry, psychology, and special education that submitted an amicus curiae brief to the court on behalf of Brian S. (Brief of Amici Curiae Hansen, Williams, Wheeler, Jacobs, & Russell, 2010; brief available upon request from first author). The authors of the brief argued that decisions about eligibility for DD services should be based primarily on an individual's level of functioning, and that care should be taken to avoid denials of eligibility based on a narrow reliance on diagnostic criteria. The case raises policy and practical implications of including specific diagnoses as part of a state's definition of DD, given that diagnostic criteria change over time as the field evolves.

In this article, we will first review the varying definitions of developmental disability in different states. The review of DD eligibility across the nation will include, in particular, the definition of “autism” used in each of the state DD statutes, and provide more detailed information about the DD system in California. We will then discuss the evolving definition of autism in the DSM. Within this discussion, we will highlight the implications for DD eligibility that autism exists as a “spectrum” disorder with a broad range of functioning across individuals with ASD. Next, we discuss problems arising from the use of the DSM to determine DD eligibility and consider the possible impact of the most recent DSM, the DSM-5 (5th ed.; American Psychiatric Association, 2013) on eligibility decisions, using Brian S. as a case example and also including a broader perspective. Finally, we end with recommendations.

Eligibility for Developmental Disabilities Services Across the Nation

The federal Developmental Disabilities Assistance and Bill of Rights Act of 2000 defines DD as a severe, chronic disability that is attributable to a mental or physical impairment, is evident prior to age 22, and results in substantial functional limitations in three or more areas of major life activity. States are required to adhere to the federal definition of DD for programs that use federal DD funds. However, when implementing their state-supported DD service systems, states may define DD in ways that vary from the federal definition. Under the Medicaid home and community-based services waiver program, states have considerable discretion in determining specific program or service eligibility criteria, the nature of the supports to be offered, the number of individuals to be served, the total dollar amount available to meet the needs of each recipient, and other key program parameters. Eligibility definitions vary among states using two types of criteria: categorical, which defines eligibility using specific medical diagnoses (e.g., intellectual disability, spina bifida, epilepsy, cerebral palsy, autism, etc.), and/or functional criteria, which describe deficits in an individual's capacity to perform any or all of the seven activities of daily living customarily viewed as necessary to living independently in the community (i.e., self-help/self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency). Criteria solely based on functional capacity can be more inclusive than criteria that are tied to a specific condition or diagnosis, and can lead to more individuals meeting the state's eligibility for services. Hence, it is not surprising that the majority of states utilize a combination of these two approaches.

Table 1 presents information for each state (and the District of Columbia) indicating whether or not specific diagnostic terms are included in the legal definition of DD. If “autism” is listed as one of the diagnoses, the table provides additional information included in the law or written regulations for that state specifying how autism is to be defined in making eligibility determinations. As can be seen, 28 states (55%) require a specific diagnosis as part of their eligibility for DD services. Of those states requiring a diagnosis, 22 include a term related to ASD within the list of diagnoses that can qualify as DD: “autism” (18 states), “autistic disorder” (1 state), “pervasive developmental disorder” (4 states), or “Asperger's disorder” (1 state). Of those 22 states, 13 provide additional information about how autism is defined.

Table 1

State Definitions of Developmental Disability

State Definitions of Developmental Disability
State Definitions of Developmental Disability

California's Developmental Disabilities System

California's DD system was established in 1971 with the passage of the Lanterman Developmental Disabilities Services Act (Lanterman Act, 1971), entitlement legislation that requires the state to provide services and supports across the lifespan to all individuals who meet the state definition of “developmental disabilities.” Services and supports are provided by a system of 21 regional centers statewide that are independent, nonprofit entities contracted by the California Department of Developmental Services, the state agency responsible for implementing the requirements of the Lanterman Act. DD services are considered an entitlement in California; therefore, the state provides whatever supports and services are needed and identified in the Individualized Program Plan, regardless of income status.

California is one of the 29 states in the nation that utilizes both categorical and functional criteria to establish eligibility for DD service. Specifically, the disability must occur before the age of 18 years, is expected to continue indefinitely, and must be substantial enough to result in functional impairments in three out of seven activities of daily living. In addition, the disability must include one or more of the following diagnostic conditions: intellectual disability, cerebral palsy, epilepsy, autism, or disabling conditions found to be “closely related to intellectual disability or to require treatment similar to that required for individuals with ID” (Lanterman Act, 1971). The California definition of DD is almost identical to that of 12 other states: Arizona, Arkansas, Florida, Idaho, Indiana, Minnesota, Montana, New Hampshire, New York, South Carolina, Washington, and Wisconsin. Thus, the example of California and the issues that arise from using diagnostic categories as part of the definition of DD has relevance to service systems in states large and small, urban and rural, and from the east coast to the west.

The term “autism” was added to the list of eligible conditions in the Lanterman Act in 1975 to prevent individuals with autism from slipping through the cracks of California's social services system; the legislature determined that individuals with autism represented a class of persons with severe impairments deemed ineligible for public services because their condition was neither a mental health disorder nor a developmental disability (Assembly Permanent Sub Committee on Mental Health and Developmental Disabilities, 1975). Since that amendment, eligibility determinations for individuals with a diagnosis of autism have varied due to the lack of a definition for “autism” across regional centers and over time.

Evolving Definitions of Autism

To understand the issues related to the use of “autism” as an eligibility requirement for DD services, it is important to consider the extent of changes in the definition of autism that have occurred over time. Additionally, prevailing beliefs in the field regarding the impact of autism on individuals' level of functioning and needs for services and supports influence eligibility decisions. As summarized by Volkmar and McPartland (2014), scientific and clinical understandings of autism have evolved considerably since the disorder was first described in the 1940s by two physicians, Leo Kanner in the United States (Kanner, 1943) and Hans Asperger in Austria (Asperger, 1944/1991). Changing definitions of the disorder can be observed in the 60-year history of changes to the DSM, detailed in Table 2.

Table 2

Changes in Diagnosis of Autism Spectrum Disorder in the Diagnostic and Statistical Manual for Mental Disorders (DSM)

Changes in Diagnosis of Autism Spectrum Disorder in the Diagnostic and Statistical Manual for Mental Disorders (DSM)
Changes in Diagnosis of Autism Spectrum Disorder in the Diagnostic and Statistical Manual for Mental Disorders (DSM)

The DSM was first published in 1952 (APA, 1952) and is currently in its fifth revision (APA, 2013). It is widely recognized as an authoritative diagnostic manual in the United States and elsewhere for a variety of purposes, including insurance reimbursement; eligibility for services within the medical, mental health, and developmental disabilities systems; guidance in treatment decisions; and diagnostic criteria used in research studies. As shown in Table 1, 14 states reference the DSM when defining “autism” for DD eligibility. Four states reference the DSM-5 specifically, five reference the “current” edition of the DSM (meaning whichever edition is in place at the time an eligibility decision is being made), and six reference the DSM-IV or DSM-IV-TR.

As currently defined in the field and in the DSM-5, autism spectrum disorder (ASD) is a developmental disability characterized by impairments in two core areas: (1) social communication/social interaction and (2) restricted, repetitive patterns of behavior, interests, or activities (APA, 2013; Lord & Jones, 2012). This constellation of impairments may manifest in minimal to severe communication deficits (Smith, Mirenda, & Zaidman-Zait, 2007), a complex collection of symptoms including restricted, repetitive, and stereotyped interests and behaviors (Bishop, Richler, & Lord, 2006), and minimal to severe compromises in the individual's ability to follow conventional norms of behavior and interaction. As such, individuals with ASD who have intellectual functioning and language abilities within the average range (which frequently has been used to deem such individuals as not qualifying for DD services) may still be unable to hold a job or participate in, and benefit from, a general education school setting without assistance (Kenworthy, Case, Harms, Martin, & Wallace, 2010; Marriage, Wolverton, & Marriage, 2009). For example, they may be impacted by a preoccupation with their own circumscribed interests that prevents them from following basic instructions and/or from maintaining a verbal interchange. These skills serve as essential requirements to succeed in instructional tasks at school and employment activities in adulthood. Although many individuals with ASD can interact with others, they may have difficulty with frequent and extended interactions compared to typically developing individuals (Schmidt et al., 2015). A majority of high-functioning adults with ASD have difficulty functioning independently (Gray et al., 2014; Green, Gilchrist, Burton, & Cox, 2000). On the other hand, individuals with ASD with milder functional impairments may be able to meet educational demands to graduate with a high school diploma and complete postsecondary education; they may become self-sufficient and live independently as adults, such that they will not need intensive long-term services through the DD system (Billstedt, Gillberg, & Gillberg, 2011). Because there is a wide range of expression leading to diverse functional levels within the autism spectrum, knowing that an individual has been diagnosed with autism does not necessarily lead to the conclusion that lifelong services and supports from the DD system will be needed. The use of the term “spectrum” recognizes this variability among individuals with ASD, and the most recent edition of the DSM (DSM-5) includes a description of severity levels to detail the amount of support needed (APA, 2013).

The complexity of ASD increases with common co-occurrence with other medical and mental health disorders. For example, Simonoff et al. (2008) found that, within a sample of 112 children diagnosed with ASD, 70% had at least one and 40% had two or more comorbid mental health disorders. Review of electronic medical records of over 13,000 individuals with ASD revealed high rates of medical comorbidities, including rates of seizure disorder and gastrointestinal dysfunction well above rates in the general population (Doshi-Velez, Ge, & Kohane, 2014). Depending on which other disorders are present along with autism, the individual's level of functioning and need for services and supports can vary dramatically (Mattila et al., 2010), thereby increasing the complexity in eligibility assessments as clinicians struggle to determine whether the root cause of the functional deficit is due to ASD or other co-occurring conditions.

Variability in the severity of autism symptoms also exists across the full range of cognitive ability. Although the terms “high” and “low” functioning have not been part of the DSM definitions of autism, the term “high-functioning autism” has been used in the research literature to refer to individuals with autism who have IQs above the range of intellectual disability (Narzisi, Muratori, Calderoni, Fabbro, & Urgesi, 2013). However, when determining eligibility for DD services and supports, the term “high functioning” can lead to erroneous decisions. When determining eligibility for disability services, assessment of “functional level” focuses on activities of daily living and acknowledges the critical role of adaptive skills that support independent and productive functioning in society (Carter et al., 1998). In the case of individuals with “high-functioning autism,” their average or above average IQ and/or verbal fluency may mask significant challenges in adaptive functioning, which may prevent independence and productivity. In spite of a high IQ and verbal fluency during testing, the unique characteristics of autism can interfere with the individual's cognitive and verbal abilities when the demands of the environment require interpersonal interaction. Although referred to as “social interaction” in the autism literature, the term “social” should not be equated with “social” activity such as recreation, but refers to any situation that requires the individual with ASD to interact with another human being. When determining the level of functioning of a person with “high-functioning autism,” it is essential for the disability system to recognize that deficits in interpersonal interaction and social communication can have substantial implications for learning adaptive skills, which in turn may limit the achievement of independence, self-sufficiency, and productivity over the life course of an individual (Kenworthy, Case, Harms, Martin, & Wallace, 2010). Also relevant to this discussion is the potential practice of using the “conditions similar to intellectual disability” category that is found in many states' definitions of DD for individuals with autism. Autism spectrum disorder leads to a very different profile of strengths and weaknesses than those of an individual with an intellectual disability (Levy & Perry, 2011), so this alternative category is often not a good fit.

Problems With Reliance on the DSM for Developmental Disability Determination

Legal reliance on diagnostic terms has been justified because it is assumed that those terms are based on scientific evidence and that they accurately and reliably capture important aspects of a person that can lead to valid determinations of eligibility for services. However, when the scientific evidence for specific diagnoses is still evolving, the validity of using these diagnostic terms for determining eligibility can and should be disputed.

Notwithstanding its widespread authority, controversy exists among clinicians, researchers, and the general public regarding the accuracy and usefulness of the DSM. An abiding concern expressed by many psychologists is the reliance on a categorical approach to the classification of disorders used in the DSM, to the exclusion of a dimensional approach to classification (Kessler, 2002). Autism spectrum disorders are currently understood to manifest along a continuum of behaviors and severity, depending on which functional activity of daily living is being assessed. Recognizing research that has documented multiple phenotypes for ASD varying in presentation and severity (Fountain, Winter, & Bearman, 2012; Lord, Bishop, & Anderson, 2015), the criterion of “substantially handicapping” becomes increasingly more important than the diagnosis, per se. Although DSM-5 now includes severity levels to indicate the degree of supports needed by individuals, no clear guidance is provided in the manual about how to classify individuals into the different severity levels. As noted by Weitlauf, Gotham, Vehorn, and Warren (2014), cognitive, adaptive, and autism-specific symptoms may all influence an individual's need for supports, but the DSM-5 ASD severity labels focus on autism-specific symptoms and do not reference measurable impacts on different domains of functioning.

Further, given the substantial changes in the DSM diagnostic criteria across the four major revisions since the Lanterman Act was passed, many individuals who would be considered to have autism under the criteria in one DSM would not be considered to have autism under the criteria in a different DSM. There is a risk that the same individual, without any change in presentation of symptoms or functional impairment, could move in and out of eligibility in the DD system. DSM-5 contains a “grandfather” clause indicating that individuals with a “well-established” previous diagnosis of any of the pervasive developmental disorders under DSM-IV criteria would continue to be considered to have an ASD. However, newly assessed individuals would not be included in that exception, and individuals eligible for services will vary going forward. To avoid this outcome, the legal authority for eligibility would need to be amended in a timely manner with each new revision to the DSM, which could be a burden to states.

The Case of Brian S.

The impact of the variation in the definition of “autism” among the DD statutes is illustrated by the legal case of Brian S., who was diagnosed with Asperger's disorder by a psychologist. Brian received special education and mental health services throughout childhood and adolescence, and had been found eligible for Social Security Insurance (SSI) assistance. In adulthood, he sought eligibility for DD services at San Andreas Regional Center in California. Brian S. was denied services under the Lanterman Act on the grounds that he “has Asperger's Disorder and not autism” (Brian S. v. Terry Delgadillo and San Andreas Regional Center, 2010, p. 34) and, “whereas Autistic Disorder is served by the Regional Center system, Asperger's Disorder is not” (p. 7). The decision to deny eligibility was appealed, and the decision was upheld by the administrative law judge (ALJ). Brian S. subsequently appealed to the court of appeals of California, Sixth District, and the authors of this manuscript were part of a group of professionals who filed an amicus curiae brief on his behalf for the appellate hearing, asserting that the trial court and the ALJ applied an overly restrictive interpretation of the term “autism” in the Lanterman Act contrary to the broad remedial purpose of the Lanterman Act.

A key argument made in the amicus curiae brief was the fact that the lawmakers who signed the amendment to the Lanterman Act in 1975 to add “autism” as an eligibility category were operating from the understanding of autism that was current at that time; the wording of the act was intended to ensure that individuals with autism did not slip through California's social services net. Thus, the legislature could not have intended, in this broad remedial statute, to limit the scope of autism eligibility to those with a specific DSM-defined condition of “Autistic Disorder,” a term that would not appear in the DSM for another 12 years.

Subsequent publications by the California Department of Developmental Services (DDS) used the term “autism spectrum disorders” and “pervasive developmental disorders” (PDDs) separately from the specific DSM-IV term “Autistic Disorder” when referring to the individuals served by the regional center system (e.g., California Department of Developmental Services, 1999; 2002). Further, the California legislature issued directives referencing “autism spectrum disorders” prior to that term's inclusion in the DSM (Assembly Bill 1656, 1998; Assembly Bill 430, 2001-2002; Senate Rules Committee Floor Analysis of Assembly Bill 430, 2001-2002). Notably, in the Senate Concurrent Resolution Number 51 (2005), the legislature acknowledged that ASDs other than autistic disorder can cause significant impairments, and that autistic disorder and the other PDDs share similar “core” functional deficits (Assembly Bill 430, 2001-2002; California Legislative Blue Ribbon Commission on Autism, 2007). Given that “autism” was added to the Lanterman Act statute before any DSM used the term, it can be argued that the legislature intended the Lanterman Act to provide services to any substantially disabled person with ASD, broadly defined.

In the end, the appellate court in California upheld the regional center's decision to deny eligibility to Brian S. Although the basis of the decision depended partly on technical aspects of the case not related to the substantive points raised in the amicus brief, the court nonetheless dismissed the notion that “the term autism” as outlined in the Lanterman Act “must encompass a spectrum of developmental disorders that includes Asperger's Disorder” (Brian S. v Terri Delgadillo and San Andreas Regional Center, 2010, p. 3). The judge noted that “questions concerning whether the language of the statute should be amended or expanded to reflect changing diagnostic practices, or to include a broader array of developmental disorders, should be addressed to the Legislature” (p. 3).

Implications of DSM-5 Definition of ASD for DD Eligibility

The publication of the DSM-5, which occurred shortly after the Brian S. appellate court decision, might have led to a different outcome for Brian S. Had the regional center recognized the DSM-5 “autism spectrum disorder” as a more accurate definition of the condition “autism” (again, a term that was added by the California legislature in 1975 to prevent individuals with this condition from slipping through the cracks of California's social service system), then the eligibility determination of the regional center would have focused on demonstrating substantial disability, not whether Brian S. had the diagnostic term that was previously used in the law. However, it has been 4 years since the DSM-5 was published and there has been no guidance from the California legislature regarding the replacement of “autism” with the DSM-5 “autism spectrum disorder.” The slow movement of changes in statute based on changing definitions of eligible DD conditions in the professional field is not unique to California. Of the 22 states that include “autism” in their definition of DD, only nine reference the DSM-5 specifically or the “current” DSM (meaning whichever DSM is current at that time) in their definition. It is unclear how the remaining states with eligibility laws that focus on diagnostic categories are proceeding under DSM-5.

Possible factors that may impact the updating of definitions of autism to ASD follow. Some preliminary research suggests that fewer individuals may meet diagnostic criteria for autism under DSM-5 compared to DSM-IV-TR (e.g., Kulage, Smaldone, & Cohn, 2014; Maenner et al., 2014; Young & Rodi, 2014). As noted above, the “grandfather” clause in DSM-5 includes those already diagnosed under DSM-IV criteria, but does not apply to newly assessed individuals. Further, it is not yet clear whether some states may require individuals diagnosed with autism under DSM-IV criteria to re-establish DD eligibility under DSM-5. Another complication is the introduction of the Social Communication Disorder (SCD) diagnosis in DSM-5, termed by one commentator as “autism lite” (Robison, 2013). This diagnosis applies to individuals with social communication deficits similar to those in ASD, but without the restricted/repetitive patterns of behavior, interests, and activities. Clinicians may find this diagnostic option useful, but because SCD is not included in the DSM-5 ASD category, it is unlikely that state DD systems using categorical eligibility criteria will consider SCD to be an eligible diagnosis.

Recommendations for Eligibility Determinations

States that use a categorical approach to eligibility determination should ensure consistent decision making statewide

Eligibility should not be affected by the location of the regional center where a person was assessed and, therefore, it is incumbent upon states to define diagnostic categories clearly and ensure consistency in assessment procedures and interpretation of findings.

States that use a categorical approach to eligibility determination should describe eligible conditions broadly enough to accommodate refinements in definitional criteria or assessment procedures over time

It is evident that diagnostic criteria for disability conditions can change over time in response to improved knowledge about the continuum of manifestation of a single condition and refinements in diagnostic approaches. These discoveries should be used to refine assessments of the severity of the condition or the level of supports needed, rather than significantly alter what constitutes a specific diagnostic condition. It is critical that definitional criteria not be so prescriptive as to prevent flexibility when definitional criteria change. One option, used currently by five states, is to reference whichever DSM is current at the time the eligibility determination is made.

States should consider the bolder stance of basing eligibility for DD services not on categorical criteria that focus on specific diagnoses, but rather on individuals' functional impairment and assessed needs for services and supports

Definitional criteria more in line with the federal definition of DD would improve access to needed services and supports for individuals with a wider range of disabilities, and would have implications beyond the population of individuals with ASD.

Discussion and Conclusions

Narrow interpretations of the Lanterman Act have led to individuals falling through the cracks. The regional center decision in the Brian S. case does just what the legislature sought to avoid—it allows people like Brian S. to fall through the cracks of the disability support system. People who received a diagnostic label of “Asperger's Disorder” rather than another autism spectrum disorder diagnosis found themselves unable to access services, even if they demonstrated that their disorder substantially interfered with basic functioning. By contrast, interpreting “autism” to include all ASD, regardless of which DSM is current at the time of eligibility determination, fulfills the legislature's intent to provide services for those with DD. An interpretation that defines “autism” broadly permits all those for whom ASD constitutes a substantial disability to access crucial services. The focus on impairment instead of diagnosis as a measuring stick for services/eligibility coincides with the original wording and intent of the Lanterman Act and avoids changing eligibility rules each time the diagnostic code is revised.

The notable increase in the prevalence of autism spectrum disorder from 1 in 150 in 2000 (Centers for Disease Control and Prevention [CDC], 2002) to 1 in 68 (1.5%) in 2014 (CDC, 2014) means that many more individuals are likely to need developmental disability services and supports in coming years. Therefore, advocating for increased budgets for the DD system will be a necessary step to ensure the safety of and the provision of appropriate supports to eligible clients. If budgets are not increased, then this could lead to a lessening of supports for those currently served or increase waiting lists for individuals newly found eligible for DD services. On the other hand, if the DD system gets smarter in how it spends its money (i.e., a greater investment in early, effective intervention at each stage of life, and doing what it takes to assist individuals to become self-sufficient), then the system will be able to accommodate a more just and fair system of eligibility determination.

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Author notes

The authors would like to thank the law offices of Munger, Tolles, & Olson LLP for preparation of the amicus curiae brief cited in the article; Robin L. Hansen, MD, and Andrew Russell, MD, for assistance with writing the amicus curiae brief, and Disability Rights California for their support in protecting the rights of individuals with disabilities and consulting with the authors.