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The importance of early developmental and behavioral treatment for children with autism is increasingly recognized. Little is known, however, about early intervention policies that may affect service delivery to these children. The current study describes states’ policies for providing early intervention services to children with Autistic Spectrum Disorders under the Individuals with Disabilities Education Act Part C and examines how Part C policies are associated with the proportion of school-age children diagnosed with autism served under IDEA. Results indicate few consistencies among states in policies and practices regarding the identification and care of infants and toddlers with autism. The implications of state variation for policy makers are discussed.
Autistic spectrum disorders (ASDs) are characterized by impairments in communication and social functioning along with restricted, repetitive and stereotyped patterns of behavior (American Psychiatric Association, 2000). Within the last two decades, estimates of the prevalence of autism and other pervasive developmental disorders have increased from 4–5 per 10,000 children to approximately 10 times that number (Baird et al., 2001; Fombonne, 2003). By definition, the onset of ASD is before 3 years of age. While a number of studies suggest that children with autism are not diagnosed until 4 years of age or later (Howlin & Moore, 1997; Mandell, Listerud, Levy, & Pinto-Martin, 2002), early identification in children under 3 years of age is becoming increasingly common (Charman & Baird, 2002; Filipek et al., 2000; Filipek et al., 1999; Mandell, Novak, & Zubritsky, in press). Increased awareness that early intervention significantly improves developmental outcomes (Lord & McGee, 2001) and the resulting earlier identification of ASD has resulted in more infants and toddlers with ASD or suspected ASD participating in early intervention programs. This increase in service utilization has burdened local medical, disability, mental health, early intervention, and education systems (Jacobson & Mulick, 2000; Jarbrink & Knapp, 2001; Mandell & Palmer, 2005; Newschaffer & Curran, 2003; California Department of Developmental Services, 2003) and has highlighted the lack of consensus regarding appropriate service models for the care of children with autism (Simpson, 2003).
Young children with ASD, like infants and toddlers with other mental health and developmental issues, may be identified and served through a variety of programs. Most infants and toddlers with recognized developmental and behavioral problems receive services through the Early Intervention Program for Infants and Toddlers with Disabilities, also known as Part C of the Individuals with Disabilities Education Act (IDEA). The Part C program was established in 1990 to support states in providing coordinated early intervention services to young children (birth to 3 years) who are experiencing, or having a high probability of experiencing, developmental delay. Children with ASD are typically eligible for Part C services due to delays in cognitive, communication or social/emotional development. Increasing evidence suggests that, because of the pervasive nature and specific deficits associated with autism, a higher intensity of specific treatment is necessary to show improved outcomes than for children with other developmental problems (Lord & McGee, 2001; Rogers, 1998). Therefore, the specific diagnosis of ASD is important both so that children gain access to Part C services and to ensure the provision of appropriate, specialized services.
Unlike other programs within IDEA, Part C is voluntary, although currently all 50 states participate. States have considerable flexibility in determining who is eligible for services and what services they receive. Although some components of Part C are federally mandated, states vary in how their systems are structured and administered, the extent of within-state variation in local programs, service eligibility criteria, the type and number of early intervention service agencies providing identification and intervention, interagency coordination, and models of intake and service coordination (Danaher, Shackelford, & Harbin, 2004; Spiker, Hebbeler, Wagner, Cameto, & McKenna, 2000).
Although it has not been systematically examined, policy differences may account for some of the 8-fold difference across states in the number of children ages 6–21 years receiving special education services for ASD (Mandell & Palmer, 2005), as well as the types of services they are provided. The few published studies of the effects of policy variation on service delivery have found that education policies and level of aide for children with disabilities are highly predictive of the proportion of identified learning disabilities (Cullen, 2003; Lester & Kelman, 1997). A number of other studies have found that state of residence is a more powerful predictor of specialty service use than demographics and perceived need among children with developmental and psychiatric disabilities (Cox, Motheral, Henderson, & Mager 2003; Hoagwood, Jensen, Feil, Vitello, & Bhatara, 2000; Long & Coughlin, 2001; Stevens, Harman, & Kelleher, 2004; Sturm, Ringel, & Andreyeva, 2003; Szilagyi et al., 2003; Zito et al., 1999, 2003; Zito, Safer, dosReis, & Riddle, 1998). Although analyses in the above referenced studies do not address policy issues, the authors of those articles hypothesize that policies are an important factor in explaining state differences.
To date, there has been little characterization of how states’ Part C policies may affect service delivery to any group of children with special healthcare needs, and no characterization of ASD-specific policies, much less how they affect children with ASD. The importance of this research was highlighted in the recent Congressional Appropriations Committee Report on the State of Autism (National Institute of Mental Health, 2004), which described discrepant early intervention policies as a major roadblock to understanding the best autism treatment options. Studies focusing on autism-specific policies are important because of the specialized nature of the services required for this population and the impact early intervention may have on reducing the need for lifetime service provision (Jacobson & Mulick, 2000; Jacobson, Mulick, & Green, 1998; Jarbrink & Knapp, 2001). Examining variation in state policies will lay the groundwork for future studies of geographic variations in service delivery and how outcomes are affected.
The purpose of this study was twofold. First, we provide a picture of states’ policies for providing early intervention services to children with ASD under IDEA Part C. Second, in order to determine whether policies have an affect on service provision, we examine whether state Part C policies are associated with the proportion of children diagnosed with autism ages 3–5 years of age served under IDEA.
Key informants from agencies administering IDEA Part C in all 50 states and the District of Columbia were contacted through information on the National Early Childhood Technical Assistance Center (NEC-TAC) website (http://www.nectac.org/contact/ptcco-ord.asp). Informants were contacted by postal mail, e-mail and phone with a description of the study and a request to participate. Informants in 46 of the 51 agencies participated. Administrators in 2 states refused because of staff burden; 3 interviews were not completed due to repeated unanswered requests.
Semi-structured interviews were used to investigate the characteristics of and eligibility criteria for early intervention services available for children under 3 years who have autistic spectrum disorders (ASD). Interviews were conducted from January 2004 through August 2005. After they agreed to participate, respondents were sent a description of the study, an interview summary and an Informed Consent agreement. Trained research assistants then contacted informants by telephone to confirm receipt of the Informed Consent and willingness to participate, ensure that the subject was the best available informant, and schedule the interview. If the informant could not answer a section of the interview or felt that someone else could better answer a question, they were asked to identify another informant. The number of informants who answered questions for a single state ranged from 1 to 3, with an average of 1.2.
Most respondents were agency administrators. Their titles included: program coordinator, supervisor, manager, director or program specialist from the Part C lead agency (51%). Others were located within the early intervention program used by the lead agency (39%). The remaining respondents were from Education (when not the lead agency; 6%), Mental Health/Mental Retardation (6%), or Human Services (3%). The average interview lasted 25 min. No child or case specific data were obtained during the interviews.
An original semi-structured survey instrument (Table 1) was developed, consisting of 2 main sections: (1) eligibility requirements for ASD-related services and (2) types of available services. The first section included questions regarding referrals, diagnosis, diagnosticians, tools used to make a diagnosis, and eligible diagnostic categories sanctioned by the state. The second section asked about general services, ASD-specific services and treatments, and whether the state had guidelines for the diagnosis and treatment of ASD.
Most states do not assign a diagnosis to children served through IDEA Part C or do not track diagnoses in this group, making it difficult to determine the proportion of children with ASD served through Part C. Therefore, the proportion of children receiving ASD services through IDEA Part B (children ages 3–5 years) was used to determine the effects of policies on the proportion of children diagnosed with ASD in subsequent age groups. The numbers of children ages 3–5 years of age served for ASD through the special education system were obtained from a website maintained by the US Office of Special Education Programs http://www.ideadata.org/. The numbers of children in each state age 3–5 years were obtained from the 2000 US Census at http://www.census.gov. The number of children served for autism was then divided by the total number of children in that age group for each state to determine the proportion of children served.
Policies and procedures were examined as a function of the median split in the proportion of children age 3–5 years receiving Part B services for autism in each state. Chi Square tests for categorical variables and t-tests for continuous variables were conducted to examine the associations of each policy variable with differences in the proportion of children receiving autism-related special education services in each age group.
The power estimate for this study was based on a binomial distribution with two groups of 23 each. As an example for the power calculation, we estimated a policy element having a frequency of 30% in one group. Assuming a significance level of .05, this study was powered to find a statistically significant difference between groups at 0.87 for a difference of 40%, 0.67 for a difference of 30% 0.40 for a difference of 20%, and 0.18 for a difference of 10%.
Table 2 shows state policy and practice variables for children with autism in the Part C early intervention system. The lead Part C agency for the majority of states was the department of health or health and human services (67%). One quarter (24%) of states used the department of education as the lead agency; the use of departments of developmental disability/mental retardation was relatively infrequent (9%).
In all states, referrals to early intervention could be made by anyone; however, referrals came most commonly from outside the system (family members and healthcare professionals) in 74% of states. Thirty-three percent of the agencies reported that most referrals constitute children who are already receiving early intervention services and are referred for an autism evaluation by their early intervention provider.
Requirements regarding the types of professional who could make an ASD diagnosis were quite variable. Many states (39%) required a specific type of licensed healthcare professional (i.e., physician or psychologist); 22% of states required an appropriate licensed professional but did not specify a specific discipline; others mandated that a multidisciplinary team be involved in assessment and diagnosis (15%). Only one state (2%) accepted a diagnosis from a school psychologist or school team. Twenty-two percent of states had no requirements for the diagnostician. Twenty-two percent of states reported that the diagnostician, regardless of credentials, must have specific experience with autism.
Only 7% of states required that professionals use a specific battery for all early intervention intake evaluations. All states left the choice of ASD-specific diagnostic instrument to the professional making the diagnosis. Some states (13%) recommended but did not require specific tools, including the Autism Diagnostic Observation Scale (Lord et al., 2000) (4 states); the Autism Diagnostic Interview (Lord, Rutter, & Le Couteur, 1994) (1 state); the Childhood Autism Rating Scale (Schopler, Reichler, & Renner, 1986) (1 state); the Autism Behavior Checklist (Krug, Arick, & Almond, 1980) (1 state) and the Gilliam Autism Rating Scale (Gilliam, 1995) (1 state).
States differed in which DSM-IV diagnostic codes under pervasive developmental disorder (which includes Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Delay-Not Otherwise Specified) would qualify a child for early intervention services. While the levels and definitions of development delay/impairment varied from state to state for Part C eligibility, in nearly all states (98%) Autistic Disorder automatically qualified a child for Part C services. Most other pervasive developmental disorders also qualified children for care in a majority of states, including Pervasive Developmental Disorder—Not Otherwise Specified (85%), Asperger’s Disorder (74%), Rett Syndrome (72%) and Childhood Disintegrative Disorder (39%). In 13 states (28%) at least one diagnosis on the ASD spectrum was excluded from Part C services if no other developmental delay was present. States were least likely to include Childhood Disintegrative Disorder (48%) and Asperger’s Disorder (24%).
A majority of the states (65%) reported that they provided all 17 early intervention services mandated for states participating in IDEA Part C, but no autism specific services; 35% of states indicated they provided specific ASD treatment programs, including behavioral, occupational therapy/sensory integration, or speech and communication interventions, to children with ASD. Within the states that provided no autism-specific services, 40% of respondents emphasized that they offered individualized services to meet the unique needs of each child, regardless of diagnosis. Many states (45%) also noted that children with ASD typically received more intensive services than other children with developmental delays and may receive services such as behavioral intervention, decreased teacher:child ratio, specialized sensory integration services, or services provided through a Medicaid waiver.
Eleven percent of states endorsed specific intervention methods for ASD, and all of these states also reported an increased number of hours of service for these children. Twelve percent of these states endorsed an eclectic model incorporating many autism-specific methods, 9% allowed service agencies to choose treatment methods and 61% reported that they endorsed no specific method. Specific methods mentioned included the National Research Council guidelines (Lord et al., 2002) (4%), TEACCH (6%), Floor Time (9%), The Denver Model (6%), Discrete Trial Training (9%), Incidental Teaching (6%), teaching within functional routines (3%), Pivotal Response Training (3%), Positive Behavioral Support (3%) and the Prizant SCERTS method (3%).
Twenty percent of states had guidelines for diagnostic assessment and 26% had guidelines for treatment for children with ASD. An additional 27% percent reported that, at the time of the interview, guidelines for diagnostic assessment were currently in development; 30% were developing treatment guidelines. All states indicated that they followed general Part C guidelines for individualizing intervention, providing functional treatment in the natural environment and including families as an integral part of the intervention process.
As Table 3 shows, there was no statistically significant associations between any of the state policies and practices variables measured in this study and the proportion of children ages 3–5 years receiving services for autism through the special education system. On average, states with a larger population of children ages 3–5 year had a greater proportion of children receiving autism services. There was no association, however, between the percent of 3 to 5 year-olds receiving special education services and the proportion receiving autism services.
Results indicated an absence of uniformity among states in policies and practices regarding the identification and care of infants and toddlers with autism. Few states have clear policies or practices in place specific to service delivery to young children with ASD. A fifth of states have diagnostic guidelines and a quarter have treatment guidelines in place, although few states endorse models that have achieved some level of national consensus or recognition, such as the National Research Council Recommendations, treatments in the applied behavior analysis family, or TEACCH. Guidelines may provide decision rules for clinicians and increase awareness of the needs of and resources available for children with ASD. On the other hand, guidelines may be developed in response to increasing demand. The fact that 30% of states are currently developing guidelines suggests growing concern and provides an opportunity to examine their impact prospectively.
Even among those states with treatment guidelines, most recommend an eclectic model, often described as using several recommended treatments based on the needs of the child. All states responded that they provide individualized services depending on the needs of the child, and therefore no one treatment could be recommended for every child with ASD in the state. While the importance of individualized care cannot be overstated, use of eclectic models is an area of controversy in the research community, with little empirical data to support or refute it (Howard, Sparkman, Cohen, Green, & Stanislaw, 2005; Stahmer & Ingersoll, 2004). A number of prominent researchers advocate for an evidence-based eclectic model as the most appropriate course of intervention (Lord & McGee, 2001). These researchers characterize eclectic practice as a systematically determined process based on child and teaching characteristics, and careful, ongoing assessment, rather than simply combining multiple methods into one program. Other researchers have pointed out that the research definition of “eclectic” may be different than what is being implemented by practitioners (Rogers, 1998). Practitioners, for example, may combine methods differently than researchers propose, without careful assessment or extended training in each technique, possibly diminishing the effectiveness of the interventions.
Only 22% of states require the diagnosing professional to have experience with ASD, even though ASD is not often addressed during training for many professionals (Heidgerken, Geffken, Modi, & Frakey, 2005; Shah, 2001). Though experts have recommended that assessment by a multidisciplinary team with ASD experience is critical for early diagnosis (Charman & Baird, 2002; Filipek et al., 2000; Lord & McGee, 2001), only 7 states require this strategy. Few states required or even recommended specific diagnostic tools, which means that clinicians with varying amounts of experience most likely rely on clinical judgment rather than standardized assessments. Without clear guidelines for identification and assessment, professionals may under-or misdiagnose, or take a ‘wait-and-see’ attitude toward beginning intervention (Filipek et al., 2000). This may lead to poorer outcomes and increase family stress (Lord & McGee, 2001).
Variation in policies and practices measured in this study was not significantly associated with the proportion of children with autism served. This may be because the proportion of children with ASD served in older age groups may be too distal an outcome; still, these differences in policies may have important implications for care. Lead agencies for Part C vary by state, with offices of developmental disability in the minority. The extent to which administrators in departments of education or health and human services have familiarity with complex chronic conditions such as ASD is unclear. States that administer services for children with ASD through offices of mental health or mental retardation within departments of health and human services may have either an acute care model if the former or a more paternalistic, vocational model if the latter than don’t necessarily meet the needs of children with autism.
The only study variable significantly associated with the proportion of children receiving ASD services was the number of children in the state. It may be that, especially for younger children in whom identification is more challenging, a critical mass is required before standard autism-specific service provision is put into place (Palmer, Blanchard, Jaen, & Mandell, 2005). Once those services are put in place, it may in turn precipitate identification of more children. The fact that the proportion of all 3–5 year olds receiving special education services was not associated with the proportion receiving autism-specific services suggests the need for specific strategies to identify children with ASD rather than children with developmental delays in general, and may be indicative of this diagnosis-specific “critical mass” hypothesis.
This study is limited by the fact that complete participation was not obtained. Given that the unit of analysis was the state, the relatively small number of potential respondents means that even 5 additional responses may have changed observed relationships. A related limitation is that the small sample size precluded multivariate analysis. A third limitation is that, as mentioned before, the dependent variables of interest, the proportion of children ages 3–5 diagnosed with ASD, may be too distal from polices focused on 0–3 year-old, thereby attenuating the observed relationship between policies and outcomes. A more meaningful set of variables might have been those related to specific interventions—both type and intensity—provided to children. Other limitations include the fact that the semi-structured survey instrument was not validated. Important policy elements may have been missed and there is not information on the accuracy of the responses. For example, it is possible that states having specific ASD services also provided the mandated IDEA Part C services and simply did not mention them, as they were not specifically asked about general mandated services. Despite investigator assurances, concerns about confidentiality may have biased responses.
Finally, because a majority of states did not require specific assessment tools or the use of particular intervention strategies, it is likely that contracting agencies were heavily responsible for diagnosing and developing treatment programs for young children with autism. Therefore, there may be wide variation in programming within a state or even within counties depending upon the agency providing the services. The responses of state officials should therefore be considered a general picture of state practices rather than a detailed description. Many states, however, are developing policies, procedures and recommendations in an effort to structure service delivery.
The provision of publicly funded autism services raises a host of policy challenges due to the growing number of children diagnosed with ASD, disagreement on both the disorder’s etiology and effective treatment strategies, an overlap between the age of diagnosis and the upper age eligibility criterion of Part C of IDEA, and an increase in legal action being taken by parents to obtain care for their children (Feinberg & Vacca, 2000). The current study provides a picture of a nation in flux as states move quickly to develop policies for serving children with ASD.
Given that the early intervention and education systems are the largest providers of care to children with ASD, it is reasonable to develop service provision models through these avenues. The goal of the education system, however, to create an environment in which children can receive a “free and appropriate education,” does not imply responsibility for providing interventions to treat children’s disabilities per se or to maximize their functioning (Lord & McGee, 2001). Strategies to specifically meet educational goals may at times conflict with treatment needs of children with ASD, for whom an increasing body of evidence suggests the need for intensive, early and specific treatment. Recent concern over infant mental health services has led to a push toward integrating infant and childhood mental health services into early intervention and educational programs, including Part C and Part B of IDEA (New Freedom Commission on Mental Health, 2003). Some research indicates that better mental health is linked with success in school and social competence may predict later academic performance (Raver, 2002; Shonkoff & Phillips, 2000). Linkages between mental health and educational programming may be especially essential for children with ASD who have developmental as well as social and behavioral difficulties. If states wish to create an environment in which children with autism receive care that maximizes community participation and reduces potential long-term service and legal costs, they must develop clear evidence-based policies for identification and treatment of young children with ASD and coordinate those policies across service systems.
Aubyn C. Stahmer, Child and Adolescent Services Research Center, Children’s Hospital, Department of Psychology, University of California, 3020 Children’s Way MC5033, San Diego, CA 92123, USA.
David S. Mandell, Department of Psychiatry, University of Pennsylvania School of Medicine, Center for Mental Health Policy & Services Research, Philadelphia, USA.