Autism Services Proposal SJR 567 1 AUTISM SERVICES PROPOSAL for the Tennessee Legislature 12/20/2002 I. Executive Summary As a response to Senate Joint Resolution 567, an interdepartmental work group met between September and December 2002 to study the current service system for children with Autism Spectrum Disorders (ASD) and their families, and to make recommendations regarding an improved service system for Tennessee children with ASD. The workgroup met also with parents and providers of children with ASD. The combined groups created a plan for Tennessee that will: Generate better outcomes for children with autism and their families Reduce overall, long-term costs by providing effective services early and intensively Minimize legal risk exposure for the state of Tennessee Definition of Autism Spectrum Disorders Autism Spectrum Disorders (ASD) are a group of five related neurobiological developmental disorders that profoundly affect a person’s ability to communicate, form relationships with others, and respond appropriately to the environment. The onset of autism occurs in early childhood and impairments are evident throughout the person’s lifespan. Manifestations of the disorder vary widely. For example, some persons are nonverbal while others have limited or adequate speech. The majority of persons with ASD are mentally retarded. ASD presents serious challenges to affected individuals and their families, as behavior is often highly problematic (e.g., self-harm) and tends to require high levels of supervision. Autism is the fastest-growing developmental disability (Autism Society of America, 2002). The prevalence of ASD in the population is not known with certainty, with ranges from 2-6 per 1,000 reported in most studies. Research for this proposal led the workgroup to use a prevalence estimate of 2-3 per 1,000. For Tennessee, this yields an estimate of 3,200 to 4,800 children ages 0-21. Incidence rates of reported autism are on the rise nationally and certainly reflected in Tennessee school numbers. The number of Tennessee public school children (ages 3-22) within Special Education with a primary autism diagnosis has risen almost fivefold from 1992 to 2002. This number is sure to continue to rise as Tennessee schools, as of July 2002, now consider a child with any form of ASD (not just autism) as eligible for Special Education. Effective Intervention Early intervention is the key to improving the conditions associated with autism (Guralnick, 1998; Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). Children with ASD can improve with appropriate early, intensive behavioral intervention that is consistent across the home and Autism Services Proposal SJR 567 2 school settings. Treatments such as speech and language therapy and occupational therapy combine with intensive behavioral therapy to ameliorate the difficult symptoms of ASD, to improve communication, and to advance some children to normative functioning. However, the intervention must be early and intensive to be fully effective. Children cannot regain lost developmental time. Early and intensive treatment is dependent on early, accurate screening and diagnosis, a network of providers with autism expertise, accessibility to services, and funding for services. Evidence-based behavioral intervention models and educational models exist for treating children with autism and should always be the choice of intervention (e.g., Dawson & Osterling, 1997; McEachin, Smith, & Lovaas, 1993). Tennessee’s Existing System Tennessee’s existing system for ASD is inadequate. The areas of greatest concern are: A limited network of trained professionals in the area of autism in: • Primary care physicians • Educators • Mental health professionals • Behavioral interventionists • Health related professions such as speech/language and occupational therapy Lack of insurance coverage for autism by both public and private insurance • TennCare excludes ASD as a covered diagnosis for behavioral health • Private insurance often excludes ASD for even routine medical care Lack of family support services (e.g., respite care; home modifications) Inadequate early intervention services Inadequate educational services Inadequate long term care options A fragmented service delivery system Costs The cost associated with caring for persons with ASD is an estimated $4.5 million per person over a lifetime (Jarbrink & Knapp, 2001); however, most of these costs are for adult services, due partially to a lack of early, effective treatment. Costs are high due to the need for intensive levels of supervision and the cost of specialty services often over many years. Tennessee costs for children with severe ASD are heightened due to sending children to other states for care, lack of a network for less expensive home-based treatment, and lawsuits against the state related to care for children with autism. Researchers have speculated that, with early intervention, cost avoidance could be as substantial as lifetime savings of $656,000-$1,082,000 per person (Jacobson, Mulick, and Green, 1998). Immediate Actions Needed Tennessee must assure its families and children with ASD of appropriate services and mechanisms to ensure those services. Tennessee must: Autism Services Proposal SJR 567 3 Assure early identification, accurate diagnosis and treatment planning capacity across all regions by funding regional diagnostic/consultation centers Create a coordinated system of autism-specific services with expert providers Provide access to individualized home-based intensive behavioral intervention Implement evidence-based, intensive early intervention strategies across all Tennessee systems in order to capitalize on the benefits of early intervention for children birth to age eight. Ensure year round school options for all students, as appropriate to their needs Ensure developmentally appropriate educational strategies and transition plans for older children (ages 8-22) (See pp. 22-24 for appropriate educational components) Assure that every school district receives training and support for educators and related professionals Establish statewide capacity to constantly improve knowledge, practice and costeffectiveness Measure improved outcomes as defined by each child’s IEP Create a clear oversight plan to ensure an effective system Create a clear funding plan for ASD services Proposed Solutions The workgroup proposes that a new model for ASD service delivery be implemented in order to reach these goals. See page 31 in this document for the organizational chart. The plan builds upon many existing structures, making it cost effective and integrative. The model includes: A Tennessee Center for ASD Five regional ASD Centers of Excellence Eight regional education ASD teams A plan for oversight of this system A plan for an advisory council to this system The Tennessee Center for ASD would uphold research, training, and information dissemination functions. The Tennessee Center for ASD would build on the current Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) at Vanderbilt University. The Tennessee Center for ASD would ensure the training of educational and health-related providers statewide, as well as keeping the state abreast of current ASD knowledge and also contributing to knowledge through research. The five regional ASD Centers of Excellence would function as diagnostic and consultation centers, as well as providing family resource services and service liaison at the local level. Some direct services in addition to diagnostic evaluations (such as medication management) would be offered at the COEs. The five COEs would also be extenders of the TRIAD training efforts, particularly with health-related professionals. The five COEs would be housed in the existing Centers of Excellence for Children in State Custody at five tertiary pediatric centers across the state. Autism Services Proposal SJR 567 4 The eight education ASD teams would function out of the eight Department of Education (DOE) regions at the local school levels as extenders of the TRIAD training, as well as providing consultation in the schools regarding children’s educational plans. Team members would be employees of the DOE and would be supervised administratively through the three grand regional offices. The Tennessee Center would be highly collaborative with the five COEs and the eight ASD education teams in the area of training professionals. The COEs, with their health-related expertise, and ASD education teams would work closely together around individual children’s plans and would act together as liaisons in both the home and school settings. This system would monitor quality of children’s plans and the Tennessee Center would research the effectiveness of the delivery model. The proposed system would be overseen at the State level by an interdepartmental unit with executive authority that would sit above individual departments and report to the governor’s office. This proposed organizational model provides: an integrated system of services trained professionals diagnostic centers quality assurance around evidence based treatment and optimal outcomes for individual children liaison service coordinators to guide individual families through the system information and referral resources direct educational and clinical consultation and services Proposed costs and financial considerations North Carolina operates a statewide autism services plan (Division TEACCH) that encompasses the regional diagnostic and consultative concepts like the proposed Tennessee model, but does not include the more extensive training, dissemination, and research features of the Tennessee Center, the regional educational teams, or service liaison functions. NC’s Division TEACCH has been in operation since 1972 by legislation and is funded annually through legislated funds. This year’s budget draws $4,655,479 from state funds; the rest of the operation is funded through Medicaid. A rough estimate of cost for the more inclusive Tennessee model is $6,571,500. A spreadsheet is located in Appendix I. Funding for ASD services is complex. Several financial issues must be considered. It is recommended that Tennessee: Create a clear delineation of available funding sources from state, federal, and private entities and ensure that Tennessee is drawing down all available funds from federal and other sources Autism Services Proposal SJR 567 5 Clearly designate a person or entity that is in charge of authorizing funding once a funding plan is designed Conduct a thorough lifespan cost-benefit analysis of treating ASD in Tennessee Consult with experts from other states that have statewide ASD service delivery (e.g., North Carolina) Consider various funding strategies such as: ♦ Use blended funding (e.g., DOE, DCS, DMRS, TennCare, DOH) ♦ Write a demonstration waiver for long term solutions to serving this population ♦ Create a collaborative waiver model with Education as the primary source of services and funding, but in partnership with other funding sources such as private and public insurance. Such a model has been designed in other states and requires that families who are not Medicaid eligible must cooperate by using their private insurance as a supplemental form of payment for services ♦ Create a funding unit for children with special health care needs, much like the model already operation under TennCare Select for children in state custody ♦ Direct funds to the Tennessee Respite Coalition for ASD specific respite care Final recommendations The original broad goals of this study included: Generate better outcomes for children with autism and their families Reduce overall, long-term costs by providing effective services early and intensively Minimize legal risk exposure for the state of Tennessee In order to reach these goals, the state must ensure that there are adequately funded services that will reach families and children with ASD. By providing evidence-based treatments early in development, the state can save money over the long run. By providing the right kinds of services and helping families afford these services, the state will be less vulnerable to lawsuits around ASD services. While this document contains much of our current understanding of ASD and of the services needs in Tennessee, there are several next steps that must occur in order to best implement this plan. These steps include: Create a subgroup that examines more closely the financial aspects of this plan Create an implementation task force for the plan; use some of the same committee members whohave contributed thus far to the plan; draw on the faculty at TRIAD and the staff at the current COEs; draw on the Autism Society of America members Make funds available in the Tennessee state budget for the plan Discern the governmental “home” for the oversight of the plan Autism Services Proposal SJR 567 6 II. Background Senate Joint Resolution 567 (Appendix A) required an interdepartmental study to propose a comprehensive statewide plan for coordinating services and maximizing their delivery to children with autism and their families. It is important to state that many persons with autism continue to require services throughout their lifespans, and while the current resolution requests a plan for children, a lifespan perspective should be considered as a next step to the children’s plan. Similarly, it should be noted that children with autism and children with other developmental disabilities share many of the same essential needs for services. Though the current proposal, in response to SJR 567, is focused on children with autism, much of it is applicable to children with other developmental disabilities. Implementation of improved services for children with autism should lead to similar improvements for children with other developmental disabilities. SJR 567 directed that the departments of Mental Health and Developmental Disabilities, Education, Children’s Services, the TennCare Bureau, and the Tennessee Commission on Children and Youth participate in the interdepartmental study. At the request of the Tennessee Commission on Children and Youth, with the concurrence of the Commissioners’ EPSDT Task Force, the Children’s Health Initiative in the Office of Health Services was designated as the lead agency to convene representatives of the departments of state government and others to develop the proposal required by SJR 567. An interdepartmental work group convened initially on September 11, 2002, and met regularly from then through December 2002 to develop the proposal to submit to the special committee of the legislature as required by SJR 567. In addition, the Children’s Health Initiative convened three other groups, which met on a less frequent basis, to provide additional information related to children with autism. These groups were: 1) a group of parents of children with autism; 2) a group of providers of educational, psychological, and medical services for children with autism; and 3) a group of developmental and psychological experts at Vanderbilt University’s Kennedy Center. Individual consultants who are experts in autism were also contacted for this effort (see Appendix B for the full list of participants). The Tennessee Developmental Disabilities Expansion Plan (June 2002) was considered as a major process of state government, which forms a context for proposals to improve services for children with autism and their families. The current proposal includes plans for relating the needs of children with autism to the recently developed Developmental Disabilities Regional Planning Councils. III. Overall Goal of the Proposal The goal of this proposal is to bear light on the complexities involved in autism and corresponding service needs, to summarize the current situation in Tennessee regarding services for autism, and to propose some solutions to bringing appropriate services to children with autism and their families in Tennessee. This proposal offers solutions that will: Autism Services Proposal SJR 567 • • • 7 Generate better outcomes for children with autism and their families Reduce overall, long-term costs by providing effective services early and intensively Minimize legal risk exposure for the state of Tennessee IV. Definition of Autism Spectrum Disorders Autism is one of the pervasive developmental disorders, as described in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV, American Psychiatric Association, 2000). Autism is a neurobiological developmental disability characterized by impairment in three major areas: • • • Impairment in social interaction Impairment in communication Restrictive, repetitive, and stereotyped patterns of behavior, interests, and activities The onset of autism occurs in the first three years of life and the impairments are evident throughout the person’s lifespan, though manifestations may vary depending on age and developmental status as well as severity. For example, about 50% of persons with autism remain non-verbal or minimally verbal throughout the lifespan (Minshew & Rattan, 1992); others develop adequate, although unusual, communication and speech. In addition, there is a range of behavioral problems associated with autism that include hyperactivity, short attention span, impulsivity, aggressiveness, self-injurious behavior, unusual responses to sensory stimuli (such as hypersensitivity to certain sounds, fascination with certain visual stimuli, and the like), abnormalities in eating, disturbances of sleep, excessive fearfulness, and abnormalities of mood. These features are highly variable, ranging from mild to severe. Autism frequently co-occurs with mental retardation. Approximately 70-75% of individuals with autism also have mental retardation. Individuals with autism often have cognitive problems even when the problems are not severe enough to meet the criteria for mental retardation. Despite the high co-occurrence of mental retardation with autism, individuals with autism vary widely in their intellectual abilities with some individuals having very low abilities and some very high abilities. Each of the Autism Spectrum Disorders (ASD) defined below, presents serious challenges to affected individuals and their families. While most involve some degree of mental retardation and often severe cognitive problems, all involve significant impairments in behavior, which can present difficult challenges to family coping. Without intervention, the behavior problems of children with ASD tend to be chronic and to severely limit their vocational and life opportunities. With intervention, especially intensive, early intervention, many of the behavioral problems associated with ASD can be ameliorated and the prognosis improved (Dawson & Osterling, 1997; Hurth, Shaw, Izeman & Whaley, & Rogers, 1999; Strain, Wolery, & Izeman, 1998). Autism Services Proposal SJR 567 8 The Autism Spectrum Disorders include Autism, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS). Two other disorders which are part of the spectrum of pervasive developmental disorders are Childhood Disintegrative Disorder and Rett’s Disorder. For purposes of the current proposal, all five disorders are collectively referred to as autism spectrum disorders (ASD). These conditions are described in detail in the DSM-IV. Brief definitions of each are as follows. • Autism – impairments in social interaction, in communication, and in the range of interests and activities; manifest by age 3. • Asperger’s Disorder – impairments in social interaction and in the range of interests and activities but without a general delay in language; cognitive abilities are not significantly delayed. • Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) – includes "atypical autism", with late age of onset (after age 3), atypical symptoms, or subthreshold symptoms with impairment in social interaction and either impairment in communication or a restricted range of activities and interests. • Rett’s Disorder – a progressive disorder characterized by loss of early developmental skills and loss of purposeful use of the hands and development of stereotyped hand movements. This disorder has been found only in girls and is quite rare. • Childhood Disintegrative Disorder – regression in multiple areas of development after normal development in the first two years of life; this disorder is usually associated with severe mental retardation, and is quite rare. V. Prevalence The prevalence of the autism spectrum disorders in the population is not known with certainty. The Centers for Disease Control and Prevention (CDC) has been studying the prevalence of autism spectrum disorders in a variety of locations, using several different methods. Studies worldwide note the range of ASD to be from 2-6 persons in 1000. The Metropolitan Atlanta Developmental Disabilities Surveillance Program has found that 2-3 of every 1,000 children ages 3-10 have an ASD. Our work group adopted a prevalence estimate of 2-3 per 1,000 based on the Atlanta study, which had the advantage of being in the southeast U.S., appeared to be a well-done study, and concurred with several other estimates from other studies with a wider population base. Although this estimate of the prevalence of ASD is not definitive, it appears to be the estimate most applicable to Tennessee, yielding an overall estimate for Tennessee of 3200 to 4800 children (ages 0-21) with ASD. Prevalence estimates based on 2-3 per 1,000 children have been calculated for each Tennessee county (see Appendix C). These figures are only an application of the prevalence estimate to the population numbers for each county – they are not a count of children actually identified with ASD. Autism Services Proposal SJR 567 9 Rising Incidence The incidence of reported autism is increasing. For example, reports from special education across the nation and world indicate more numbers of children with autism enrolled in schools. In Tennessee, the numbers of identified children with autism, ages 3-22, has significantly increased from 1992 (n = 367) to 2002 (n = 1505). It should be noted that the numbers in Figure 1 (below) are based only on children identified with autism rather than the broader ASD category. In July 2002, the Department of Education broadened its definition to include the ASD disorders in addition to autism, so the numbers of children in the 2002-2003 school year is expected to increase further1. Also, the numbers reported in the schools appear to be an underestimate of the numbers of children with autism expected relative to the prevalence estimates. This discrepancy may be due to multiple factors. Some children with autism are classified in diagnostic categories other than autism (e.g., mental retardation, speech and language impaired); some children are not counted due to attending home school, private school, or being institutionalized; and some children, particularly younger children and children with more mild manifestations of ASD, are not being diagnosed at all. Figure 1. Number of Students with Autism Identified by Tennessee Schools 1600 1400 Number 1200 Of Students 1000 800 Autism 600 400 200 91 -9 2 92 -9 3 93 -9 4 94 -9 5 95 -9 6 96 -9 7 97 -9 8 98 -9 9 99 -0 0 00 2 0 -0 01 1 -2 00 2 0 School Year 1 The numbers of young children, birth to age 3, identified by Tennessee’s Early Intervention System as having autism are much smaller, reflecting the difficulty of diagnosing children with ASD early in life. For the 2001-2002 school year, 153 children from birth to 3 years of age were identified as having autism. Large numbers of children were identified with speech and language delays or with general developmental delays. Many children from these classifications will later be found to have autism. Autism Services Proposal SJR 567 10 The cause of increased numbers of children being diagnosed with autism is not known. Possible contributing factors to the rising incidence of reported autism and ASD are: 1) higher numbers of children being diagnosed due to better diagnostic services and increased awareness in the population about developmental disabilities and ASD, 2) numbers reflecting the full spectrum of ASD, rather than autism only; 3) better data collection efforts, and 4) asyet-unrecognized environmental causes of ASD. One careful study conducted in California2 in 1999 at legislative request concluded that the unprecedented rise in reported cases of autism in California between 1987 and 1998 could not be explained by a loosening in the diagnostic criteria, misclassification, nor in the issue of children “migrating” to California for services. The study concluded that the increase was not artificial, but could not explain the causes of the increase. VI. Tennessee’s Existing System Tennessee’s existing system for serving children with autism is inadequate. There is a broad consensus from parent, provider, and state focus groups, a 2002 informal survey of 130 stakeholders across the state, and previous Tennessee autism task forces that children with autism and their families are not receiving adequate services in education, health, behavioral health, and family support services such as respite (see Appendix D for related documents). A study of TennCare services (Ruble, Heflinger, Renfrew, & Robson, in press) found that the rate of children with ASD served by TennCare between 1995-2000 for any kind of service delivery in health and behavioral health services was 10 times less than the expected number of enrollees. Furthermore, a reduction in services (most notably day treatment) was noted in this time frame. Few children received autism-specific kinds of treatment like habilitative services and speech and language therapy. The study identified gaps between the current known standards of care for treating children with ASD and the local access and delivery of behavioral health care services provided in Tennessee. The inadequacies in the system include: • Limited network of trained professionals in the area of ASD Professionals particularly needed to serve children with ASD include special educators, primary care providers, mental health providers, speech and language pathologists, occupational and physical therapists, and dental providers. The recent survey named TRAINING as the most needed service across all areas of the state. The Department of Education (Division of Special Education) has taken first steps to train educators through a contract with the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), however, the scope of the contract has some limitations, including: 1) 2 The conclusion: “Without evidence for an artificial increase in autism cases, we conclude that some, if not all, of the observed increase represents a true increase in cases of autism in California, and the number of cases presenting to the Regional Center system is not an overestimation of the number of children with autism in California” (The Epidemiology of Autism in California, Executive Summary, 2002, p. 5). Autism Services Proposal SJR 567 11 until this year training has been for preschool only; 2) contract offers little opportunity for follow-up to the trainees, and 3) the anticipated “train-the-trainer” model has not materialized within some regions where special educators have been trained, due in part to lack of resources and support to allow time off for new teachers to be trained. It is clear that, for the training program to be successful, there must be more support for trainer development as well as more resources for TRIAD staff to follow up with the trained teachers in the field. More training is needed within secondary educational institutions. While there is some training within the state such as the federally funded Leadership Training in Neurodevelopmental and Related Disabilities (LEND) that teaches a section on autism to interdisciplinary groups out of the UT-Boling Center and Vanderbilt’s Division of Child Development, there clearly need to be more educational efforts. There are no state-funded training initiatives at the professional level for training in autism. • Lack of insurance coverage for autism by both public and private insurance Autism and mental retardation as primary diagnoses are specifically excluded in the contract between TennCare and the BHO, as well as in most private insurance plans. In other words, if the behavioral challenges appear to be “autism-related”, and not specific to a mental illness (e.g., bipolar disorder), then the BHO declines payment responsibility and usually will not be asked to pay upon appeal. Even if a child is served due to having a dually diagnosed mental illness, the BHO does not have contracts with autism-specific service providers or service delivery systems, once again highlighting the lack of specialists in the network (See Appendix E for this contract language). Services such as speech, occupational, and physical therapy are often needed for children with autism. While these services, when medically necessary, fall under the auspices of covered health benefits, the insurance plan reviewers often refuse to pay for children with autism, stating that these specialized services should be delivered by the educational system. The argument is that the services are “educationally related” rather than “medically necessary”. Because children with autism often need such services intensively and early, there may be both an educational and medical need. The lack of clarity gives room for debate between systems. Children have been caught between systems as they try to obtain needed services, often losing precious time and obtaining the “legal minimum” of a service rather than the appropriate “dosage” of various services. However, at least in the realm of public health coverage, c;aroty does exist, at least in writing, that the MCOs and education have joint responsibility for services. TennCare Standard Operating Procedure #019, dated January 1, 1994, addresses the subject of MCO responsibility to provide medical treatment to children receiving special education services. It states in part: “in the case of a TennCare-eligible child identified as eligible for special education as part of the Individuals with Disabilities Education Act who is also identified as having “related services” needs that must be met in order for the child to benefit from special education, TennCare MCOs are required to provide TennCare Autism Services Proposal SJR 567 12 covered services for TennCare children despite the inclusion of such services in the child’s individualized education program…” Services such as occupational therapy, physical therapy, speech therapy and any other TennCare covered services are the responsibility of the MCO.” Despite TSOP # 019, however, families continue to struggle to get covered services for their children with autism. • Lack of Family Support Services Tennessee’s existing system lacks important non-entitled services that have traditionally been deemed as not medically necessary, and fall outside coverage from insurance companies, but are often the kinds of services needed to maintain a child in the home. Respite services, intensive in-home behavioral assistance, personal assistance, and home modifications are currently non-entitled services that are not covered under Tennessee’s existing service structure for children with autism. Families, providers, and other stakeholders, through the recent statewide survey, indicated that respite, in-home personal care, intensive in-home behavioral interventions, and home modifications were inadequate. See the following percentages from 130 respondents from a recent informal survey that was answered by statewide stakeholders such as parents and providers of children with autism: • • • • Service Deemed Inadequate in 2002 Survey Respite 82% Personal assistance/care 77% Intensive behavioral intervention 77% Home modifications 78% Many families with children with ASD need in-home modifications for safety such as special door locks, bed modifications, and alarm systems. The state should assure that there is a mechanism to provide these services to families who cannot afford them. Families of children with autism speak of the challenging and draining experience of day to day life with children with severe autism. These families experience burnout and exhaustion and often require respite to continue caring for their children in their homes. Locating respite providers to give caregivers a break, or personal assistants to aid in the activities of daily living such as feeding and bathing may be the key to keeping children in the home. Finding professional caregivers with the special training to care for the unique demands of a child with ASD is problematic. All families with children with ASD need periodic respite. The State should assure that there is a statewide system of respite services available. • Current Status of Respite Services in Tennessee Some children with autism who have a dual diagnosis of mental retardation have been able to access limited respite services through auspices such as Tennessee Voices for Children with funds through the Family Support Program (Division of Mental Retardation). Families who have been fortunate enough to receive the Family Service Program funds and find appropriate Autism Services Proposal SJR 567 13 respite services have reported positive outcomes. There are few trained respite providers, however, who can serve children with autism who also have serious behavioral challenges. There is a need for autism-specific providers and for more respite funds. The FSP has a very long waiting list for families. Currently, there is a model respite services delivery vision through the Tennessee Respite Coalition (TRC), housed in DMHDD. A federal grant funds a coordinator for the Tennessee Respite Coalition, which has been in existence for several years. This group has a statewide presence, with seven regional TRC groups, and has served as a collaborative, networking entity, which advocates for respite services across lifespan and disability. All sectors with an interest in respite are represented in this group. The Coalition has developed a statewide model for lifespan respite services that cross all ages and disabilities. The Tennessee Respite Coalition will be a 501(c) 3 (nonprofit) program which will house an infrastructure which will train providers across the state in the specific skills needed to deliver respite services, as well as doing information and referral service and running a voucher program which would provide assistance to families unable to pay for respite service. The respite services will be delivered in seven regionally based lifespan respite programs. All lifespan respite programs will work with providers to deliver respite services. • Inadequate Early Intervention Services While there are federally mandated early intervention services delivered statewide through the Tennessee Early Intervention Services for children birth to age three, the workgroup consensus is that these services are greatly variable across the state in terms of adequacy; the services often do not begin early enough for families and children to benefit; and transition from the early intervention services to pre-school is always abrupt and usually uncoordinated. Although research indicates that early intervention services for children with autism should ideally be available for children up to age eight, the federal statute allows for these services to go at least to age three but up to age five. Since children with autism are often not diagnosed until age two or later, the current TEIS services are often too brief to be fully beneficial. There needs to be a system where the types of services available for early intervention services can be extended through the early elementary years. (See Appendix F for the federal guidelines for early intervention and the TEIS guidelines). Section VIII details the importance of effective early intervention. • Inadequate Educational Services Educationally, many families report that their children with autism do not receive the types or amounts of educational services that are most beneficial to children with autism. While there is an overwhelming general consensus across the state that educational services are not adequate, there are spotted reports of certain school districts or specific local school programs that are addressing the needs of children and families adequately. Such school districts are seeing an influx of families with children with autism moving into their districts. This phenomenon is creating a capacity issue. Section XI details appropriate educational services. Autism Services Proposal SJR 567 14 The majority of families accept the school’s version of the Individualized Education Program (IEP) which typically meets the minimum of legal requirements and is often not adequate to meet the individual child’s needs. Parents have described many educational programs as “babysitting”. Others have indicated that their child is getting the right services, but not nearly enough to create progress toward IEP goals. Parents describe the relationship with the IEP team as very strained, lacking collaboration. Parents with training in autism and due process, or those with legal counsel or advocates, have sometimes successfully gained needed services for their children. This often has come at great expense, such as expensive lawsuits (for both parents and school districts), frustration and relationship tension, and lost time for children. Most families express a great frustration when describing their attempts to gain sufficient school services. Many families, however, report important progress in their children once adequate services have been obtained. Finally, although early intervention is seen as foundational for children with autism, another very specific need emerges at the other end of the age range, that is, the transition from school to work. Tennessee has virtually no specific system for training young people with autism in the skills needed to work and live as independently as possible. Many young persons with autism can be trained to contribute productively to the work force; however, the services for these young persons need to be developed within the educational system and should be autism-specific. Educational services are available for youngsters to age 22; there is a great need to invest some resources in this transitional population. The specifics of these needs are discussed in section XI. • Inadequate long term care options Long-term care is a complex issue, but an important one for children with autism. While ideally, most children who need long term care would best be served by home and community supports, this would require a “waiver” service that would only be accessible by those who meet eligibility and it would require a waiver that matches the service needs of children. There is not such a waiver for children in Tennessee. Under the federal Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) statute, institutional long term care (ICFMR) is a covered service for those who are Medicaid eligible and meet medical necessity criteria. However, there are very few ICFMR placements in Tennessee and ICFMR services are rarely the best treatment option for children. (Office of the Surgeon General, 1999). Thus, long term care needs for children on both public and private insurance plans are not, at this time, readily available in Tennessee. Although a few children have become eligible for long-term care through the MR waiver, these few children have been considered “crisis exceptions”, due to the risk of entering state custody without services. Once children have been accepted into the long term care facilities, it is clear that the services are set up for adults, not for children. Because most children with autism, by definition, require long term care at some level, there is a clear need for a long term care program that is more accessible for children’s entry and for services that better match children’s needs (e.g., home-based services). Autism Services Proposal SJR 567 15 VII. Costs A recent estimate of the lifetime costs associated with autism is $4.5 million per person (Jarbrink & Knapp, 2001). Costs for services for children with severe autism and behavioral challenges are high due to: • the need for intensive levels of supervision; • the chronic and intense nature of the behavioral challenges; • the need for a combination of specialty services (e.g., psychiatry, behavioral specialists, speech/language, etc.). In addition to these general reasons for high costs, greater expenses for Tennessee children with autism occur due to: • lack of specialists in a given area, creating the need for travel or for out of state treatment; • lack of integration of services leading to fragmentation of care so that behaviors continue to be unnecessarily problematic; • lack of less expensive home-based services available that specialize in serving children with autism and their families , again leading to more costly out-of-home placement; • lawsuits against the state Following are a few recent examples of children with autism from Tennessee, and the costs associated with their care. One family with a 9 year old boy with autism and profound mental retardation was struggling with extremely challenging behaviors from their son, including self injury and aggressive outbursts. When they could not obtain appropriate services through the TennCare channels, they successfully sued the state. Their son was placed out of state in a residential program. The state paid about $16,000 a month for 10 months. This would amount to $192,200 per year. The treatment providers in this facility did not think that this child could return home, however, his parents wanted to give it a try. Because the lawsuit was driving payment for the treatment, the family was able to access good home-based behavioral interventions for their child. Since May 2002, the care for this child is costing approximately $3500 per month, or $42,000 per year, a savings of approximately $150,000 per year. With appropriate services, there are better outcomes for the child and family at a lower cost to the state. ----------------------------------------------------------------------A 14-year-old boy with autism and mental retardation was having a difficult time remaining in the care of his grandmother due to behavioral challenges. He was placed in an adult psychiatric facility, paid for by the BHO (TennCare) Autism Services Proposal SJR 567 16 and the cost was $675 per day. He remained in this facility for months, despite the fact that it was not appropriate to meet his needs. The Implementation Team from the Department of Health became involved and the child was placed in a Professional Support Home (family-based care) with behavioral support services at a cost of $355 per day. Since there is not an entity that pays for these kinds of services for children in Tennessee, state only funds are used to support this child in the current plan. He is making progress in this placement and the state is saving $320 dollars per day on his care as compared to the psychiatric facility. Creating a coordinated, intensive early intervention service system to which children have adequate access can ameliorate the costs associated with autism. This effort would result in decreasing symptomatology in children with autism, which in turn reduces human and dollar costs. Compelling evidence exists that early intervention is effective; this will be briefly reviewed in the next section. In terms of cost, however, a group of researchers from Pennsylvania conducted a theoretical lifespan cost-benefit analysis associated with the benefits of early intervention for persons with autism compared to persons with autism not receiving early intervention services (Jacobson, Mulick, and Green, 1998). This speculative study was based on costs of intervention for an average of three years per person and known clinical benefits of early intervention. At varying rates of effectiveness and in constant dollars, this study puts forth a model that estimates that cost savings would range from $187,000 to $203,000 per person for ages 3-22 years and from $656,000 to $1,082,000 per child for ages 3-55 years. This cost-benefit analysis suggests that the initial annual investment of EIBI services ($33,000-$50,000 per child) would, again, theoretically, be worth the savings. The analysis indicates that significant cost-aversion or cost-avoidance may be possible with EIBI. VIII. Effectiveness of Early Intervention • Early Intervention is a known key to improving the conditions associated with autism; the benefits of early intervention cannot be regained at a later time. Early intervention describes the provision of services, under federal mandate, to young children with disabilities or at risk of developing disabilities. These services include the evaluation, assessment and treatment of young children with disabilities from birth to three in most states, but from birth to five in a few states that have extended the age limit. These services are rendered in the hopes of lessening the effects of the child’s disability or condition. In Tennessee, the Tennessee Early Intervention Services, known as TEIS, is the service delivery mechanism for these federally mandated services. There are nine TEIS regions that serve children, ages birth to three, who have a wide variety of developmental disabilities. Early intervention is dependent on early and accurate diagnosis. One of the issues raised by families and providers is that children often have limited access to early intervention services because they are diagnosed too late to be eligible, or have a very short time in the early intervention program Autism Services Proposal SJR 567 17 Early intervention for children with autism requires the development of an individualized treatment plan, which includes both academic and non-academic goals. The goals and objectives for a child with autism may include social skills, self help skills (dressing, toilet training, feeding oneself, etc.), communication, behavior modification, as well as others as appropriate. It is important to stress that no one program is appropriate for all children with autism. A program should be designed to work with each child’s unique strengths and challenges (see Appendix F for a list of services available for Early Intervention Services through the 1990 Individuals with Disabilities Education Act (IDEA), Part C, as well as the TEIS guidelines). There is substantial evidence that children with a variety of developmental delays and disorders have a greater chance for successful outcomes if interventions are started at an early age (e.g., Guralnick, 1998). Thus, there has been an increased emphasis on programs for “early intervention” in the past decade. Likewise, many experts agree that intervention at early stages in a child’s development may have a greater chance for success for children with autism (e.g., Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). Over the past 25 years, a small number of programs have worked intensively on researching interventions for young children with autism and their families. These programs have published information about the characteristics of children served, the methodologies used, and the child and family outcomes. Although the programs vary in their philosophical approach and strategies, they include several common elements detailed below. Dawson and Osterling (1997) reviewed eight model early intervention programs for children with autism. These studies meet good scientific standards and the results point to the effectiveness of these eight model programs. The results of these studies have been adopted as the standard for creating the early intervention guidelines for autism services in New York State. The common elements that have been found to underpin successful programs for children with autism include3: • • • • 3 Curriculum content. Five basic skill domains including: 1) to attend to elements of the environment that are essential for learning, especially to social stimuli; 2) to imitate others; 3) to comprehend and use language; 4) to play appropriately with toys; and 5) to interact socially with others. Highly supportive teaching environments and generalization strategies. The programs first try to establish core skills in highly structured learning situations and then work to generalize these skills to more natural environments. Predictability and routine. Since the behavior of children with autism is easily disrupted by changes in the environment and routine, the programs adopt strategies to assist the child with transitions from one activity to another. Functional approach to problem behaviors. To address problem behaviors, the environment is structured to help avoid problems. When problems persist, a functional approach is used that involves: 1) recording the behavior; 2) developing These elements are taken from the Clinical Practice Guideline: Report of the Recommendations; Autism/Pervasive Developmental Disorders, sponsored by the NY State Department of Health Early Intervention Program (1999). Autism Services Proposal SJR 567 • • 18 a hypothesis about the function that behavior serves for the child; 3) changing the environment to support appropriate behavior which allows the child to cope effectively with the situation; and 4) teaching appropriate behaviors to replace problem behaviors. Plans for transition from preschool classrooms. The programs teach “survival” skills that children will need later on in order to function independently in preschool or school classrooms. Family involvement. The programs include parents as a critical component in the intervention for young children with autism. Parents give insight into creating an intervention plan, they add hours of intervention, and they can help with the maintaining and generalization of skills. Tennessee examples regarding early intervention Consider the following examples about two Tennessee children with autism: A situation with early intervention services A child, currently age 5, was diagnosed with developmental problems at age 15 months and referred to Tennessee Early Intervention Services (TEIS). At age 20 months he began attending a developmental preschool and receiving speech therapy. Soon thereafter, he was diagnosed with mild to moderate autism. The child received autism-specific intensive therapy with a program in Applied Behavioral Analysis (ABA) for 12 hours a week for which TEIS paid. Later, TEIS paid for speech and occupational therapy, as well as 6 hours a week of the ABA. (Private insurance had been contacted and had deemed the needs “educational”, refusing to pay for speech and occupational therapy). At age 3, due to age limits, the child was no longer eligible for TEIS, however, the local public preschool program (through his IEP) agreed to continue the ABA program with the same providers. Current evaluations at Vanderbilt have determined that this child no longer falls in the autism range, but is achieving at the average and above average level of skill. He no longer qualifies for speech therapy. He is now mainstreamed in regular education classes with no special supports. Due to early intervention with autism-specific, evidenced based services, this child has been able to succeed and the state no longer will pay for special services. A situation without early intervention services A child with autism and mental retardation, currently age 10, was adopted at age 5 after several failed foster placements. She had never been diagnosed with autism, nor had she had any early intervention services for severe behavioral challenges and developmental Autism Services Proposal SJR 567 19 problems. She was nonverbal when adopted. While her primary care physician (PCP) tried to treat her symptoms with medications, the PCP gave neither diagnosis nor referral for a specialized assessment. Finally, at age seven, a provider in North Carolina diagnosed this child with autism. The family still travels out of state to a provider experienced in prescribing medications for autistic children, after seeing a very reputable psychiatric provider in Tennessee whose service was ineffective due to lack of knowledge regarding autism. The adoptive, single mother, herself a professional in the area of social services, began a long struggle with the public education system. Although her child was hearing impaired and making some progress with sign language at the Tennessee School for the Deaf, services were discontinued due to her behavioral issues related to autism. Following, the county school district would not put her in a program for hearing impaired children, placing her instead in a Consolidated Developmental Classroom (special education classroom) without an interpreter. Her mother had to go to due process in order to obtain an interpreter. Costs to this family have been enormous. The mother recently gave up her full-time work due to the inaccessibility of after-school care (child was ejected from after-school care) and assistance during school breaks (e.g., holidays; summer). This mother’s income has drastically decreased while expenses have drastically risen. She has spent over $13,000 in due process hearings with Special Education, has depleted her savings account, had to quit her job, and has found the entire process exhausting. This mother has paid out of her pocket for assistance in the home, for respite, and for occupational and physical therapy. The mother has had difficulty acquiring respite care (both in finding a provider trained in physical restraints and in obtaining funding) but is currently getting some respite through Tennessee Voices for Children (initially BHO funded; now ARC funded). Likewise, she has been through a long, frustrating battle between the BHO and MCO on coverage of needed services such as in-home personal assistance. Clearly, this child did not receive the benefits of early intervention that might have given her the communication, behavioral, and social skills to have more success in daily living. Even with a dedicated and informed parent advocating hard for her daughter, the services for this child have been difficult to obtain. These two cases obviously differ in the level of the children’s initial impairment. While the first child was helped to achieve normal functioning, the second child’s potential has not been realized. While it is improbable that she could have reached “normal” functioning, she would Autism Services Proposal SJR 567 20 likely have been able to achieve some behavioral control and some level of independence if she had been afforded early intervention services. Her family life would have likely been smoother; she would probably have been able to stay in after school programs with her peers. However, she probably would have required some level of continued services across her lifespan, no matter what the intervention. At this point, it is uncertain whether her mother will be able to keep her in the home; the mother has been advised to move to a different state where the educational services offer more autism-specific support. IX. Immediate actions needed There are several clear actions that Tennessee should take to ensure that children with autism and their families are comprehensively served in order to maximize the effectiveness of treatment for ASD. These include: • • • • • • • • • • • Assure early identification, accurate diagnosis and treatment planning capacity across all regions by funding regional diagnostic/consultation centers Create a coordinated system of autism-specific services with expert providers Provide access to individualized home-based intensive behavioral intervention Implement evidence-based, intensive early intervention strategies across all Tennessee systems in order to capitalize on the benefits of early intervention for children birth to age eight. Ensure year round school options for all students, as appropriate to their needs Ensure developmentally appropriate educational strategies and transition plans for older children (ages 8-22) Assure that every school district receives training and support for educators and related professionals Establish statewide capacity to constantly improve knowledge, practice and costeffectiveness Measure improved outcomes as defined by each child’s IEP Create a clear oversight plan to ensure an effective system Create a clear funding plan for ASD services These points will be elaborated in sections to follow, most notably in section XIII that outlines a proposal for an organizational model for autism-specific resources. The following paragraphs are designed to continue to discuss the specific needs of children with ASD. X. Screening and Diagnosis Periodic screening as part of routine child care Early diagnosis of autism that results in appropriate and consistent interventions has been shown to be associated with improved long-term outcome (Committee on Children with Disabilities, American Academy of Pediatrics, 2001; Filipek et al., 2000). However, there is considerable evidence that routine health care for children misses a significant proportion of developmental and behavioral problems (Dworkin, 1989; Glascoe & Dworkin, 1993; Autism Services Proposal SJR 567 21 Majnemer, Rosenblatt, & 1994). In fact, one constant theme among the focus groups surveyed for this report to the Tennessee legislature was that many children with autism are not being identified or referred early by their primary care providers. Use of validated developmental/behavioral screening instruments in well childcare improves detection of developmental and behavioral problems (Committee on Children with Disabilities, American Academy of Pediatrics, 2001). A 2001 American Academy of Pediatrics (AAP) policy statement on autism stated that for pediatricians, "There must be a high index of suspicion, especially when parents have concerns about their child's language and social development...." (Committee on Children with Disabilities, AAP, 2001; p.107). The recommendations further state that all children should be formally monitored and screened for developmental progress at every well child visit with special vigilance when deficits are noted in language or social skills development. Ideally, children who have abnormal screens, especially in these areas, should have further screening specific for ASD with standardized, well validated instruments (e.g., Modified Checklist for Autism in Toddlers (M-CHAT; Robins, Fein Barton, & Green, 2001), or they should be referred to a specialist or multidisciplinary team with expertise in autism. In Tennessee, however, such resources are limited. Historically, there has been state funding for university-based diagnostic centers, but the funding has decreased markedly in recent years. A report by the American Academy of Neurology in their 2000 autism guidelines stated that while as many as 25% of children in a typical primary care practice may have developmental issues, fewer than 30% of primary care physicians conduct standardized screening tests at well child visits. (Filipek et al., 2000). In Tennessee, TennCare has recommended use of validated developmental/behavioral screening instruments as part of Early and Periodic Screening, Diagnosis and Treatment (EPSDT) well child screening. In July 2002, the Tennessee Health Department began use of the recommended screening instruments in its EPSDT well child screenings but use of such instruments in well child care in Tennessee is not widespread outside the Health Department. The reasons for the lack of developmental screenings at well child visits are multifaceted and include lower than desired reimbursement rates for a screening process that often leads to more paperwork and triage, lack of PCP familiarity and comfort with the screening instruments, lack of training and awareness by PCPs of the full range of developmental disabilities, especially ASD, lack of personnel to conduct these time-consuming screens, and inadequate referral resources for children with positive screens. Implementation of widespread effective screening for early detection of ASD depends on: • Ongoing, time-efficient educational programs to train PCPs to recognize the wide spectrum of symptoms of ASD • Reimbursement policies that allow adequate time to be spent in the use of the screening tools and in the management and coordination of care in the context of a medical home4 (AAP Committee on Children with Disabilities 2000-2001). 4 The American Academy of Pediatrics has a nationwide effort to establish “medical homes” for children with special health care needs. The American Academy of Pediatrics (AAP) believes that Autism Services Proposal SJR 567 • • 22 Persons within PCP offices with the time and expertise to conduct the screens and follow up with triage (e.g., maybe “extenders” such as social workers) An adequate number of behavioral specialists who accept referrals for diagnosis of autism School systems require information beyond screening from several sources in order to certify that a child has a diagnosis of autism and is eligible for special education services. These include: • • • • • • Parent interviews Behavior observations in two settings Medical report of physical and neurological information from a physician, pediatrician, or neurologist Assessment by speech and language specialist Assessment of cognitive, adaptive behavior, and social skills Documentation of how autism adversely affects educational performance Assessment information is then used by a multidisciplinary team, which includes the parents of the child, to develop an Individualized Family Service Plan (IFSP) for children under 3 or an Individualized Educational Program (IEP) for children from 3 to 22. The ISFP or IEP should reflect the needs of the individual child, as documented in the assessment process, and provide for services to address those needs. Details about services provided through IFSPs or IEPs are discussed in the following section and also in Appendices F and G. XI. Educational service needs for children with autism and their families Federal and state definitional and eligibility criteria Information gained through recent task forces and surveys clearly indicate that educational services are the most important source of help for children with ASD. Because children with ASD need intensive, consistent, behaviorally-based learning, the educational system bears the primary responsibility for the developmental progress of children with ASD. The federal IDEA law indicates that autism is a developmental disability that must be addressed through special education. The State Board of Education Rule 0520-1-9-.01 states a definition for autism that is consistent with the federal IDEA statute. The current task force endorses the DOE state standards as they stand. The state’s definition of autism conforms to current medical and behavioral health standards, and the addition of including eligibility for the entire autism spectrum serves as an important inclusion. Likewise, the standards for determining medical care should be accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. Termed " medical home", this model provides for a primary care physician to collaborate in partnership with the child and family to: 1) Interact with early intervention programs, schools, early childhood education and child care programs, and other public and private community agencies to be certain that the special needs of the child and family are addressed; and 2) Provide care coordination services in which the family, the physician, and other service providers work to implement a specific care plan as an organized team. ( AAP Policy Statement, Pediatrics Volume 110, July 2002, pages 184-186). The Tennessee chapter of the American Academy of pediatrics has endorsed this concept and worked diligently to promote this concept in the state. Autism Services Proposal SJR 567 23 eligibility are sound and use a multidisciplinary approach (See Appendix G for our state definition, eligibility standards, evaluation procedures, and evaluation participants for autism.) As a part of the IDEA guidelines, each child should have an IFSP (ages 0-3), or an IEP (ages 3-22) that is developed by a multi-disciplinary group of persons knowledgeable about autism in partnership with parents in order to facilitate goals, objectives and outcomes for the child and family. Although the current state definitions do indicate that a multidisciplinary team is formed that includes parents, the current definitions do not indicate that persons on the task force must have expertise in autism-specific services. IDEA posits that all states must: “ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for employment and independent living.” (34 CFR 300.1 (a)) Core educational components The work group recommends that educational programs for children aged birth to 22 years old with autism include several core components. First, there is clear evidence that many children with autism need year round educational services in order to maintain and continue educational gains. Many children without summer educational programs lose ground that is difficult, if not impossible, to regain (Committee on Children with Disabilities, AAP, 2001). The work group members concur that a year round model must be a goal for Tennessee children as appropriate. Services must be individualized for the child and family and based on the IFSP/IEP goals, objectives and outcomes to address all areas of development, including, as appropriate: • • • • • • • Functional communication skills Social skills and relationships Cognitive developmental skills (including attending skills) Fine and gross motor skills Prevocational skills Positive behavioral skills and adaptive skills Family involvement and participation The above general areas of development are supported through various, autism-specific services including some or all of the following: • • Behavioral intervention5 (very intensive in earlier years, e.g., ages 0-8) Speech and language therapy 5 Behavioral intervention includes many possible techniques. The techniques included under the umbrella of Applied Behavioral Analysis have passed research standards indicating their effectiveness. Under the ABA umbrella, however, are a number of techniques such as discrete trial training and incidental learning. See Appendix H for a fuller description of the ABA approach. Autism Services Proposal SJR 567 • • • • • 24 Audiology assessment and accommodations if needed (especially critical in early intervention years) Occupational therapy Physical therapy Parent training Consistent use of data collection and monitoring Depending on the nature of the child’s needs and the child’s specific learning style, a combination of environments should be accessed to best serve that child in a least restrictive and most educationally appropriate way. The amount of time spent in these environments should be child specific and may change over time. Inclusion is the philosophical idea that children with disabilities learn best when included in environments with typically developing peers. The current task force emphasizes that special education programs should facilitate inclusion with typically developing peers as appropriate, with decisions made on the basis of an individual child's needs. A quote from the recent 2001 report, Educating Children with Autism, discusses inclusion as follows: “… a child must receive sufficient individualized attention on a daily basis so that individual objectives can be effectively implemented; individualized attention should include individual therapies, developmentally appropriate small group instruction, and direct one-to-one contact with teaching staff. … To the extent that it leads to the specified goals (e.g., peer interaction skills, independent participation in regular education), children should receive specialized instruction in settings in which ongoing interactions occur with typically developing peers”. A quote from a chapter regarding preschool services agrees that inclusion is important, but emphasizes that the needs of the individual child are paramount as stated in the following quote: “The goal of integration into the typical school setting is unquestionably correct. However, for some children a normalized setting, even with extensive support services, may not be the least restrictive setting. Central to the issue is one’s definition of “least restrictive.” For some children, a strategy of a continuum of services, from an intense, focused, individualized, specialized setting to the more typical classroom with required support services, is the most appropriate. This allows for rapid acquisition of needed skills and for a choreographed approach to habilitation …”6 Next, services should facilitate active engagement across settings, with children being actively engaged for appropriate periods of time. Current national education standards recommend 2025 hours of active engagement as a target amount for children birth through age eight 6 Raymond Romanczyk, Linda Matey, and Stephanie B. Lockshin, (1994). In Preschool Programs for Children with Autism by Sandra L. Harris and Jan S. Handleman (Pro-Ed: Austin), Ch. 10, The Children’s Unit for Treatment and Evaluation. Autism Services Proposal SJR 567 25 (Committee on Educational Interventions for Children with Autism, 2001). Active engagement is defined below. “… the child is engaged in systematically planned, developmentally appropriate educational activity aimed toward identified objectives. Where this activity takes place and the content of the activity should be determined on an individual basis, depending on the characteristics of both the child and the family” (Educating Children with Autism, 2001 p.220) One complaint in the current Tennessee system is that some children do receive the appropriate hours of active engagement while in the early intervention system, but do not continue to receive this engagement once they are age three and are in the regular educational system. Often, children at the age 3-6 year old level continue to need many hours of active engagement in the home as well as in the preschool and other settings. Sometimes, the homebased interventions abruptly end at age three, leaving children without the needed consistency of program to generalize their learning across settings. Another complaint is that the term “active engagement” can be misconstrued to mean “being with typical peers”. Some children are put in “inclusive” settings and then are given services that appear to be more like typical “childcare” rather than active autism-specific curriculum. Thus, an aide may be involved all day with a child to ensure his/her safety, but the child is not adequately stimulated and thus is not progressing. Quality control/accountability All services in the educational setting should be autism-specific and evidence-based. There exist specific curricula for working with children with autism in the various service modalities such as speech and language, occupational therapy, social and adaptive skills, behavioral skills, and physical therapy, as well as the basic academic curricula and cognitive skills such as learning how to learn and paying attention. Furthermore, ongoing program evaluations based on appropriate data must occur to document the child’s progress and to facilitate any needed adjustments in the IFSP/IEP. A main component of Applied Behavioral Analysis is to collect consistent data and monitor the child’s progress based on the data. So, if ABA principles are consistently utilized within the educational curricula, data monitoring should be an integral part of the process (see Appendix H for ABA defined). Transition services Transition services are a key component to adequately addressing the needs of persons with developmental disabilities. The IDEA Public Law 105-17 mandates that all states ensure that students with disabilities are “prepared for employment and independent living.” (34 CFR 300.1 (a)) Autism Services Proposal SJR 567 26 It is essential that the transition between early intervention services and preschool services, as well as between Pre-Kindergarten to Kindergarten be well coordinated in order for the child to continue making consistent progress. It is also important that the option for autism services continue to include in-home interventions if needed, as well as intensive classroom interventions. If transition at these early stages is not handled well, children are at risk of losing skills that may be difficult, and often impossible, to regain. Transition services for high school students (ages 14-22) should include the kinds of services and supports that allow students to learn independent working and living skills that will lead to success following the school years. Integrated high school programs with specific living and vocational skills that are geared toward young persons with autism must be stressed. Families and students should be helped throughout development to think about goals for life after high school and to develop long-range plans that can be addressed within the high school curriculum. Note the following IDEA 1997 transition requirements: (b)(1) For each student with a disability beginning at age 14 (or younger, if determined appropriate by the IEP team), and updated annually, a statement of transition service needs of the student under the applicable components of the student’s IEP that focuses on the student’s courses of study (such as participation in advanced placement courses or a vocation education program); and (2) For each student beginning at age 16 (or younger, if determined appropriate by the IEP team), a statement of needed transition services for the student, including, if appropriate, a statement of the interagency responsibility or any needed linkages. The federal regulations that include interagency linkages must be strictly enforced for students with autism. The law states that needed transition services: “includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and if appropriate, acquisition of daily living skills and functional vocational evaluation (34 CFR 300.29(a) (3)).” Thus, it is important that eligible students gain the benefits of Vocational Rehabilitation Services and other interagency services while still in high school that are, under IDEA, their right. It is an eligible child’s right according to the Tennessee DOE Division of Special Education manual that: “A comprehensive vocational evaluation must be completed on every eligible child by the child’s 14th birthday. It includes an assessment of the child’s interests and aptitude” (Tennessee DOE Division of Special Education, IEP Procedural Manual, p. 13). Autism Services Proposal SJR 567 27 Recommended components for an integrated transitional curriculum for this age group, as individually appropriate, include: • • • • • • • • • • • Identifying most effective learning styles and job preferences Introduction to structured community work experiences Working with a job coach Employer relations Coworker relations Use of transportation Supervised management of money Community skills training including communication Identification of a conservator Self-regulation and relaxation skills Transitions in health care plans and insurance coverage Transitional programs to follow the formal educational experience are also desperately needed; however, such services go beyond the scope of this legislative proposal. XII. Service Needs of Children with Autism and their Families Barriers to care. All of the work groups surveyed for this document have reported that acquiring services for children with autism is difficult. Providers, advocates, and families report that they have frequently encountered disagreements among various payment sources (e.g., insurance companies, Managed Care Companies (MCOs), Behavioral Health Organizations (BHO), Department of Education, Division of Mental Retardation Services) over responsibility for payment and provision of services. For families of children with ASD there is considerable variation in health insurance benefits in amount, scope, duration, and provider of service. In addition, insurance coverage may change with time. As families of children with ASD experience the demands of raising a child with significant cognitive and behavioral problems, a parent may be forced to quit or change jobs, and, thus, insurance coverage available through employers may change. In the private sector, insurance companies may subcontract with a BHO for mental health care that is limited in scope. In Tennessee, behavioral and physical health needs of children on TennCare (Medicaid eligible) have been divided into BHO and MCO services. When a child with autism has a behavior that is clearly the result of a defined mental illness such as bipolar disorder, the BHO will cover treatment related to that diagnosis. However, the current TennCare BHO contract excludes autism if this is the only given diagnosis for a child’s behavioral problems. Many private insurance companies also exclude coverage for primary autism. This makes it problematic for a child with autism and disruptive or aggressive behaviors to get needed mental health services. In addition, many private insurance companies exclude autism as a billable diagnostic category for covered services. Autism Services Proposal SJR 567 28 In both private insurance and TennCare, respite services and long term care (discussed previously in this proposal) are not covered. In addition, behavioral analysts and behavioral specialists trained to assist in developing behavioral intervention plans for children with autism are often not eligible for mental health licensure, thus currently rendering them ineligible to be service providers through many BHOs, including TennCare. Even beyond the issues of screening mentioned previously, recruiting physicians to participate in the care of children with ASD has been hampered by low reimbursement rates relative to the time required to coordinate care and deal with the special needs of these children and their families. Such activities as phone consultations or visits to schools for IEP participation are rarely reimbursed under private or public insurance plans. Likewise, psychologists and behavioral interventionists are not able to bill for attending IEP meetings or travel time to a family’s home to conduct intensive behavioral services. Some insurance companies will not accept a child for even routine medical coverage if the child has a diagnosis of autism. Another barrier to care reported by the focus groups is that many agencies have case managers, leading sometimes to multiple case manages and a “diffusion of responsibility” such that no one person is “steering the ship”. Also, sometimes federal and state regulations preclude case managers from more than one agency being involved simultaneously. For example, a community services agency (CSA) family support services (FSS) case manager cannot continue to work with a family if a mental health case manager is assigned through a community mental health center. The result is that children may have multiple case managers or multiple sequential case managers with no single consistent person or agency directing care over time. The following list of services is based on an assumption that most children with ASDs will have some type of insurance program (either public or private) that provides for physical health coverage through a policy that relegates mental health coverage to a BHO through a subcontract arrangement or through TennCare, where health services are divided between care MCOs and BHOs. The following list is not intended to be inclusive. Autism Specific Health Needs • Medications Psychoactive medications do not address the core symptoms of autism but are frequently helpful in addressing behavioral problems associated with ASD. Medications can significantly improve behavior and the child’s ability to respond to educational and behavioral interventions (Cohen & Volkmar, 1997). Though much more study is needed, research has demonstrated the effectiveness of some medications in reducing aggressive behavior (King, 2000), agitation, self-injurious behavior, stereotypic motor movements (McDougle, Kresch, & Posey, 2000), perseverative behavior (Barnard, Young, Pearson, Geddes, et al., 2002; Gordon, 2000), anxiety, irritability, hyperactivity (Aman & Langworthy, 2000), and sleep problems. Research has also indicated side effects of many medications and points to the complexity of using medications for children with ASD. Management of medications for children with ASD is a sophisticated process and requires Autism Services Proposal SJR 567 29 trained child psychiatrists, developmental pediatricians, or pediatric neurologists to assure safety and effectiveness of treatment. The co-occurrence of ASD with seizure disorders, estimated at 25-30%, (Minshew & Rattan, 1992) means that a significant proportion of children with ASD are treated with anti-seizure medications (Tuchman, 2000). Cooccurring ASD and seizure disorders present challenges in use of psychoactive medications with children who require anti-seizure medications. There is a great need for trained child psychiatrists, pediatric neurologists, and developmental pediatricians for appropriate treatment of children with seizure disorders and ASD. • Evidence-Based Behavioral Interventions Behavioral interventions are the cornerstone of effective treatments for children with ASD and should be delivered in both the home and school setting. Because children with ASD have unique behaviors, BHOs should be required to develop a network of trained providers with autism expertise who can develop comprehensive, individualized behavioral management programs. BHOs should be empowered to contract with trained behavioral analysts and specialists so that Applied Behavioral Analysis services can be offered to children with autism. Because needs of children with ASD and families change with time, BHOs should be required to provide ongoing monitoring of the behavioral programs with this same network of trained providers. Provisions should be in place to assure that there is coordination with the school personnel to assure consistency between in-home and in-school behavioral management plans. • Other Important Treatments/Services Speech/ language therapy is usually a needed service for children with autism. Often, occupational therapy and physical therapy are also indicated. Although these services are provided through the schools, they are often not comprehensive enough to adequately meet the child’s needs. MCOs should be required to cover these services to the extent that the PCP feels that they are medically necessary to provide optimum benefit. Personal assistance is an important service for children with autism who require intensive assistance with activities of daily living and supervision to ensure safety from selfinjurious behaviors. MCOs should be required to offer personnel assistance as necessary. Children with autism have a great need for care coordination due to the spanning of multiple systems inherent to their condition. Coverage for enhanced case management with an individual trained in ASD is essential to quality care. Such a model might be a shared responsibility of the MCO and BHO when these are separate (e.g., TennCare) or a part of the comprehensive package when the MCO covers behavioral health also (e.g., many private insurance companies). • Therapy for family groups and siblings, specific to dealing with having a family member with autism, should be available. • Children with severely disturbed behaviors may occasionally require out-of-home placement. This should be given in the least restrictive environment possible. The BHOs Autism Services Proposal SJR 567 30 should be required to have an adequate network of residential facilities. Ideally, the emphasis should be on short- term, individualized, family-like programs such as professional support homes7. Likewise, as children with ASD transition to adulthood, some young adults may be able to transition to independent living while others may require long term supportive living that cannot be provided in the home due to the advancing age of the caregivers. The state must assure that there are adequate resources for these persons. • Respite Services and in-home modifications, previously discussed in section VI are crucial services for families with children with autism and have been funded traditionally outside of the managed care companies. In sum, because ASD spans a broad array of symptoms from mild to severe developmental challenges, plans of care must be individually tailored and changed as necessary with time. To achieve the goal of providing appropriate and consistent care for a child with ASD, insurance companies should not be allowed to exclude autism from their list of covered services, reimbursement to providers should be appropriate to assure an adequate network of both primary care and specialty care providers in a medical home model, there should be clear guidelines for state agencies (e.g., DOE and DMRS) relating to which services fall under their purview, families should have a knowledgeable and consistent case manager, and treatment should be family focused and evidence based. XIII. Organizational Model for Autism-Specific Resources This proposal endorses a new infrastructure for a statewide, comprehensive service improvement plan for autism services. This plan builds upon many existing structures, making it cost effective and integrative. See figure 2 (next page) for an organizational map of this proposed plan. As can be seen, the plan includes a state-level oversight unit, a state center for ASD, five regional diagnostic and consultative centers, and eight regional educationally based autism teams. These entities are interconnected in important ways that are detailed in the following paragraphs. 7 Professional Support Homes are homes are much like “therapeutic foster care” models, where “professional” parents are trained to care for special needs children in their homes. Autism Services Proposal SJR 567 31 Governor’s Cabinet Oversight Dept of Education (DOE) Tennessee Center for Autism Spectrum Disorders 5 COE & Autism Spectrum Disorder Units 8 DOE Regional Education Autism Teams CHILD/FAMILY Providers School Autism Services Proposal SJR 567 32 State-level leadership. First, improvements in services to children with autism and their families will require governmental leadership with: • • • Executive, interdepartmental authority in state government Expertise in autism Multi-agency involvement The leadership entity should be a super-ordinate unit that reports directly to the governor’s office. Due to the multi-agency services involved in autism, it is imperative that the leadership unit is given the kind of executive authority that is above individual departmental heads. Such an entity could be similar to a children’s cabinet model (as long as there is one authorized decision-maker) or it could be a unit within an oversight agency for children’s health related services. The new administration will likely make changes that cannot be anticipated at this time, thus, there may be a “home” for an autism leadership unit that will become apparent within a new structure. Tennessee Center for Autism Spectrum Disorders The proposed Tennessee Center for ASD would be the “mother ship” of current knowledge and best practices in the area of ASD that would relate to the regions within Tennessee. The Tennessee Center for ASD should ideally be located at Vanderbilt University, due to its current resources and activities in the area of ASD. Vanderbilt houses several autism-specific entities including: 1) the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) located in the Division of Child Development, which is well-known for its diagnostic clinic for developmental disabilities; 2) the Kennedy Center that studies developmental disabilities and includes the Susan Gray School which includes children with autism spectrum disorders in its developmental preschool program, 3) the Vanderbilt Bill Wilkerson Center, which provides speech-language and other services to children with ASD. The Tennessee Center might best be located under the umbrella of the Division of Child Development in the Department of Pediatrics, which is the organizational home of TRIAD, which has been the most significant research and training center on autism spectrum disorders in the state. The Tennessee Center for Autism Spectrum Disorders would have three main functions including: • Research • Training • Dissemination/information and referral. Research. The Tennessee Center for ASD will conduct studies on the early identification of autism spectrum disorders, incidence rates of ASD in Tennessee, best practices for ASD intervention, and evaluation studies on this proposed statewide infrastructure. TRIAD’s Autism Services Proposal SJR 567 33 faculty has produced a body of research on screening and assessment of ASD. This research will continue with the research support that TRIAD has obtained from federal sources. Some additional research activity should be funded by the state of Tennessee to support development and evaluation of services for children with ASD. In addition, the Tennessee Center for ASD will pursue grants from federal and other sources for special projects as needed. Training. The Tennessee Center for ASD will assume the role of providing consultation, training, and quality oversight to the five regional ASD Centers of Excellence (COEs) and to Educational ASD Teams located in each of the eight regional offices of the Department of Education (DOE). The Tennessee Center staff will ensure, through a certification process, that all the professionals at the COEs have specific ASD expertise, and will train the DOE staff to the level of expertise such that they could then replicate training for educators within the eight DOE regions. Thus, the training function will be an extensive part of the Tennessee Center’s responsibility. The Tennessee Center for ASD will also provide ongoing consultation regarding identification, assessment, and intervention with children with ASD, as well as dissemination of current research findings to keep the staff in these centers abreast of advances in the field. Other training functions of the Tennessee Center for ASD will be to provide training for primary care providers on screening for ASD and work to support broader use of screening instruments in primary care. In addition to training PCPs, the state center will coordinate training through other parts of this system (e.g., regional centers) to mental health providers, speech and language therapists, occupational therapists, physical therapists, institutions of higher learning, and parents should also be part of the plan. Finally, there should be an expanded continuation of the current contract with the Department of Education in which educators are trained statewide by TRIAD. The five regional resource ASD centers of excellence and the eight DOE teams should be trained to help extend the TRIAD training. Dissemination. Dissemination of best practices will be the third component of the Tennessee Center. The Tennessee Center will work to create a state of the art, ASD information center and will disseminate both electronically and otherwise the best practices and treatment breakthroughs to providers and consumers within the state. In the related area of information and referral, the Tennessee Center would connect with the existing state-supported information and referral services for developmental disabilities at the Kennedy Center at Vanderbilt (“Pathfinders”) in order to enhance the ASD referral information within that system. While the information and referral system would be overseen as is, the Dissemination unit of the Tennessee Center would collaborate closely with the Kennedy Center to develop and maintain the ASD specific components of that network. Regional Autism Spectrum Disorder Centers of Excellence In addition to the Tennessee Center for ASD, autism expertise will be developed at five Regional ASD Centers of Excellence (COEs). These COEs are essential to the coordinated Autism Services Proposal SJR 567 34 system of care called for in SJR 567. The regional COEs will be the “hub of the wheel” in terms of ensuring that health-related autism-specific services reach the level of the individual child. The primary functions of these COEs will be: • • • • • • • • to conduct comprehensive, ASD specific, multidisciplinary evaluations to facilitate care plans and provide ongoing consultation to providers within the designated regions to provide triage services for children with ASD to provide enhanced care coordination to families within the regions to provide training to providers and within institutions of higher learning to disseminate information to providers and parents To act as liaisons within the schools to ensure IEPs are adequate and goals are met To act as liaisons to pull the required agencies together (per IDEA) to plan transitional services for students aging out of high school In order to build on an existing infrastructure, the COEs should be located as special units within the already existing Centers of Excellence for Children in State Custody. These five COEs, four of which are operational (one is still in contract negotiation), are in the following locations: • • • • • University of Tennessee in Memphis at its Boling Center for Developmental Disabilities (Memphis) Vanderbilt University (Nashville) East Tennessee State University (Johnson City) East Tennessee Children’s Hospital/ Cherokee Behavioral Health Systems (Knoxville) TC Thompson Children’s Hospital/Focus Psychiatric Group (under contract negotiations) (Chattanooga) Each COE’s current leadership would develop its ASD unit to best draw on its current staff as well as to maximize the ASD resources within its respective region. Each COE would collaborate closely with the ASD Team of each Department of Education region within the COE’s geographic area to provide consultation, care coordination, and multidisciplinary assessment for complex cases. The geographic DOE regions would break out as follows: • University of Tennessee – Memphis, Boling Center will serve two DOE regions (Northwest and Southwest); • Vanderbilt University will serve three DOE regions (Mid-Cumberland, South Central, and Upper Cumberland); • East Tennessee State University will serve one DOE region (Northeast); • East Tennessee Children’s Hospital/Cherokee Health Systems center will serve one DOE region (East); • T.C. Thompson Children’s Hospital/Focus Psychiatric Services center will serve one DOE region (Southeast). Autism Services Proposal SJR 567 35 Each regional center will have professional resources to include: • a developmental pediatrician; • a child psychiatrist; • a child psychologist; • a behavioral interventionist; • an educational specialist; • a speech and language pathologist; • an occupational therapist; • a physical therapist; • a family resource specialist, knowledgeable about service resources within the region and connected to families of children with ASD; • a cadre of ASD services liaisons that will serve as specialized care coordinators and will be located throughout each region. The family resource specialists at each COE will supervise this cadre of liaisons. ASD services liaison staff will report to the family resource specialists in the COEs but will be home-based, equipped with a laptop computer, fax machine, and pager for communication with the COEs, DOE teams, schools, and families. These staff persons will have skills to support parents to become expert advocates for their own children. They will serve as a point of access to the full range of services for children with ASD and their families. To do so, they will be knowledgeable about services in all relevant departments of state government and knowledgeable about medical, psychological, and other therapeutic resources in their area. They will function as “boundary spanners” who are not limited by departmental lines but bring services together to address the needs of individual children and their families. These staff will have training in ASD and will have access to training from the Tennessee Center, the COEs, and the DOE teams. ASD services liaison staff will work with parent groups in their area and work on development of parent volunteers in connection with the family resource specialist from each COE. Regional Educational Autism Spectrum Disorder Teams Each of the eight regions of the Department of Education (DOE) will have an ASD Team. These teams will be administratively organized under the State DOE through the three grand regions of DOE (West, Middle, and East). The ASD Teams will include: • • • a special educator with ASD training and experience a speech and language pathologist with ASD training and experience a behavioral interventionist with ASD training and experience Each ASD Team will receive certification training from the Tennessee Center for ASD and will maintain communication with the Tennessee Center for ongoing training. Each ASD Team will receive updates on research from the Tennessee Center so that they will be kept current with developments in the field of ASD. The ASD Teams will provide both replication TRIAD workshops for educators as well as the ongoing, hands-on consultation within local schools in their particular region in order to enhance the training of special educators who have gone through the TRIAD workshops. As mentioned earlier, the need for follow-up with Autism Services Proposal SJR 567 36 educators who are instructing specific children each with unique challenges, has been a large gap in the training program currently in place. Each ASD Team will also communicate regularly with the regional COE for assessments and for liaison services as described above. XIV. ASD Advisory Councils Advisory councils should occur at two levels. Currently, the already established COEs for children in state custody have quarterly meetings, which include the COE leaders as well as advisors. The ASD COEs should be overseen in a similar manner. Each ASD COE should have local representatives (providers, parents, and other stakeholders) who would participate in quarterly meetings to discuss the operations of the ASD service delivery system. Representatives from the Tennessee Center should be present at these meetings and the leadership should be from the state level government oversight unit. At the second level, the Tennessee Department of Mental Health and Developmental Disabilities has had a State Mental Health Planning and Policy Council for many years. Seven regional councils composed of various stakeholders, including consumers of mental health services represent this council. With the recent expansion in Title 33 for Developmental Disabilities to be uniquely considered, TDMHDD has recently implemented seven regional DD councils that will be represented at a newly formed State Policy and Planning Council for Developmental Disabilities. The mission of this group will be to assist in the planning of a comprehensive array of high quality prevention, early intervention, treatment, and habilitation services and supports and to advise the DMHDD on policy, budget requests, and developing and evaluating services and supports. To this end, it is important to have representation from families of children with ASD. At each regional level, there should be representation from families and providers of children with ASD and there should be representation at the state level also. It is hoped that the regional DOE and COE units in connection with the Autism Society chapters in Tennessee will be instrumental in facilitating representation within this council structure. The regional representatives should have a close connection with staff at the Tennessee Center in order to be kept abreast of best practices. XV. Network Development Network development should concentrate on: • • • Provider training in the field University training for burgeoning professionals Pilot projects Development of the network of providers of services will require training for professionals of many different types: pediatricians, family physicians, psychiatrists, psychologists, educators, special educators, speech therapists, occupational therapists, behavior interventionists, physical therapists. The Tennessee Center for ASD, the regional Centers of Excellence, and Autism Services Proposal SJR 567 37 the Department of Education regional ASD Teams will provide a variety of training experiences and follow-up to develop the competencies of these professionals to provide services for children with ASD and their families. These centers will also recruit experts from within the state as well as recruit out-of-state experts to come to Tennessee to participate in the development of services for children with ASD and their families. In addition, it is essential that the university training of professional, graduate, and undergraduate students in the professions serving children with ASD include training on ASD and experience in working with children with ASD. The Tennessee Center on ASD and the regional COEs will serve as a resource to universities regarding appropriate curriculum content for training programs for professionals such as speech and language pathologists, occupational therapists, physical therapists, mental health and medical professionals. Another aspect of developing the network of services for children with ASD and their families is to fund pilot projects for model services such as model classrooms at various levels of the educational system. While the preschool programs will emphasize intensive early intervention “learning how to learn” approaches, the high school model classrooms should emphasize transition to post-school education and work. XVI. Evaluation Component Evaluation of the effectiveness of services will be important for assessment and development of services for children with ASD and their families. The Tennessee Center for ASD will take the lead role in research and evaluation and will guide measurement and data collection by the DOE ASD Teams, the COEs, and others providing services to children with ASD. One goal of evaluation will be to develop effective methods of measuring progress of individual children toward their IEP goals. Compilation of data on progress will provide a database for evaluation of intervention methods and information on studies of intervention methods will be disseminated through the service system. Effectiveness data, outcome data, and financial data will be analyzed to assess cost-benefit characteristics of services. Additional studies will be designed to address family outcomes and satisfaction with services. Administrative studies such as frequency of complaints, disputes, and litigation related to services for children with ASD will also be conducted. Some states have already implemented solid evaluation methods for ASD services (e.g., New York; see http://web.nysed.gov/vesid/sped/autism/apqi.htm). XVII. Financing Services for Children with ASD and their Families Children with ASD have complex needs that require multi-disciplinary services that inevitably span across multiple potential funding sources within the current structure of the state of Tennessee. It is imperative that the state designate a group of policy makers to create clear policies about payment sources and services along with clear utilization review criteria for serving children with ASD. Autism Services Proposal SJR 567 38 The most significant expenditures in providing services for children with ASD are educational, spanning from the time a developmental problem is found through the transition out of the school system in early adulthood. A large portion of these expenses are already borne by schools through federal and state funds, but additional funding will be necessary both to improve the services provided to children and their families and to cope with the increasing numbers of children with ASD to be served by the schools. Additional services to be funded include in-home behavioral interventions, particularly in the early years (from infancy to age eight); greater availability of speech and language therapy, particularly in the early years; more intensive behavioral programs in the schools, and improved transition services in both the early and the later years of schooling. TennCare is an important source of funding for those children who are TennCare eligible. With approximately 40% of all Tennessee children enrolled in TennCare, a significant portion of the health and behavioral health services required for children with ASD is funded through TennCare. Children with TennCare Medicaid coverage are entitled to medically necessary health and behavioral health services. For routine medical care, TennCare works well for children with ASD according to the recent survey. However, for specialized services specific to the ASD diagnosis, such as speech therapy, occupational therapy, and physical therapy, there continues to be a lack of clarity regarding which services should be provided by the managed care companies and which through special education services. Furthermore, as stated elsewhere in this document, there are explicit clauses in the BHO contract that exclude serving children’s behavioral problems if due to a diagnosis of ASD. For children not included in eligibility for TennCare, there is a need for a regulatory body (e.g., Dept. of Commerce and Insurance) to review the commercial insurance policies in order to enforce that ASD is not excluded from major insurance carriers. At this time, some of the major companies will not accept children with ASD on their policies, even for routine medical care. There are several possibilities for a funding structure that need further consideration either singularly or in combination. However, a subgroup of financial advisors is needed to think through the cost-benefit issues involved in various funding strategies for children with ASD. This group should: • • • • • • Clearly delineate available funding sources from state, federal, and private entities Ensure that Tennessee is drawing down all available funds from Federal and other sources (e.g., foundations) Clearly designate a person or entity that is in charge of authorizing funding once a funding plan is designed. Conduct a thorough lifespan cost-benefit analysis of treating ASD in Tennessee Consult with experts from other states that have statewide ASD service delivery (e.g., North Carolina) Consider various funding strategies such as: Use blended funding (e.g., DOE, DCS, DMRS, TennCare, DOH) Write a demonstration waiver for long term solutions to serving this population Autism Services Proposal SJR 567 39 Create a collaborative waiver model with Education as the primary source of services and funding, but in partnership with other funding sources such as private and public insurance. Such a model has been designed in other states and requires that families who are not Medicaid eligible must cooperate by using their private insurance as a supplemental form of payment for services. Create a funding unit for children with special health care needs, much like the model already operating under TennCare Select for children in state custody. Direct funds to the Tennessee Respite Coalition for ASD specific respite care Once this information is in place, there should be clarity about “who pays for what” or a new model from which to draw down funds and direct services. Whatever the funding structure, the proposed organizational model for ASD services will need to be funded on a yearly basis. Estimated Costs for a Statewide Model for ASD Services North Carolina has operated a statewide model for delivering ASD services since a legislative directive in 1972. Division TEACCH stands for Treatment and Education of Autistic and Related Communication Handicapped Children. Division TEACCH is funded annually by the North Carolina legislature, tied to land grant universities. Operating with nine Regional Centers that has a single executive director, TEACCH provides diagnostic evaluation, individualized curriculum development, social skills training, vocational training, and parent counseling and training all free to families. Division TEACCH provides these services for over 5,000 persons with autism, both child and adult, however, the root of the division began as a child-oriented service and has grown to include the lifespan. The annual budget for Division TEACCH is $4,655,479. This does not include funding for the model TEACCH classrooms or any educational costs. The educational costs are funded directly through the NC Dept. of Public Education Services. NC state funds cover 140 staff salaries out of 325 total TEACCH staff. The remaining funding comes from Medicaid dollars. Proposed budget estimate for the new Tennessee organizational model The model proposed for Tennessee is more extensive than that in North Carolina. The proposed Tennessee Center for ASD will have more extensive training and dissemination functions than Division TEACCH; will provide direct involvement of DOE services; and will provide some direct services through the COEs over and above diagnostic and consultative services (e.g., liaison services; medication management). A spreadsheet in Appendix I includes estimated costs for the Tennessee model proposed in this document. While state-only dollars must be designated for this proposed model, it is possible that a federal grant could be obtained to demonstrate the effectiveness of this type of statewide model. Perhaps a blending of state and federal dollars could be achieved once the Tennessee Center is operating and able to write a demonstration grant. The overall cost is estimated to be $6,571,500 and will cover the following features: Autism Services Proposal SJR 567 40 ASD research Statewide training to: Enhance expertise of professionals in the health-related fields Enhance training programs in university professional training programs Enhance training of educators Enhance training of parents Regional diagnostic capacity Regional consultative/treatment planning capacity Some regional, direct services (e.g., medication management) Regional family resource specialist to aid families Locally-based service liaisons to provide care coordination to families Regionally-based school consultative and direct services available to local school districts Liaison service within local schools (e.g., IEP meetings; transition planning) Final recommendations The original broad goals of this study included: Generate better outcomes for children with autism and their families Reduce overall, long-term costs by providing effective services early and intensively Minimize legal risk exposure for the state of Tennessee In order to reach these goals the state must ensure that there are adequately funded services that will reach families and children with ASD. BY providing evidence-based treatments early in development, the state can save money over the long run. BY providing the right kinds of services and helping families afford these services, the state will be less vulnerable to lawsuits around ASD services. While this document contains much of our current understanding of ASD and of the services needs in Tennessee, there are several next steps that must occur in order to best implement this plan. These steps include: Create a subgroup that examines more closely the financial aspects of this plan Create an implementation task force for the plan; use some of the same committee members that have contributed thus far to the plan; draw on the faculty at TRIAD and the staff at the current COEs; draw on the Autism Society of America members Make funds available in the budget for the plan Discern the government “home” for the oversight of the plan Autism Services Proposal SJR 567 41 XVIII. References Aman, M.G., & Langworthy, K.S. (2000). Pharmacotherapy and hyperactivity in children with autism and other pervasive developmental disorders. Journal of Autism and Developmental Disorders, 30, 451-459. American Academy of Pediatrics, Committee of Children with Disabilities. (2001) The pediatrician’s role in the diagnosis and management of autism spectrum disorder in children. Pediatrics, 107, 1221-1226 American Academy of Pediatrics Policy Statement. (2002). The Medical Home. Pediatrics, 110, 184-186. American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders: Fourth Edition, Text Revision. Washington, DC: American Psychiatric Association. Autism Society of America Fact Sheet, 2002. Bethesda, MD. www.autism-society.org Barnard, L., Young, A.H., Pearson, J., Geddes, J., et al. (2002). A systematic review of the use of atypical antipsychotics in autism. Journal of Psychopharmacology, 16, 93-101. Cohen, D.J., & Volkmar, F.R. (1997). Handbook of autism and pervasive developmental disorders (2nd edition). New York, NY: John Wiley & Sons, Inc. Committee on Educational Interventions for Children with Autism, National Research Council (2001). Educating children with autism. Washington, D.C.: National Academies Press. Dawson, G. & Osterling, J. (1997). Early intervention in autism. In M. Guralnick (ed.) The Effectiveness of Early Intervention p. 307-326. Baltimore, MD: Paul H. Brookes Publishing. Dworkin, P.H. (1989). British and American recommendations for developmental monitoring: the role of surveillance. Pediatrics, 84, 1000-1010. Filipek, P.A., Accardo, P.J., Ashwal, S., Baranek, G.T., Cook, E.H., Dawson, G., Gordon, B., Gravel, J.S., Johnson, C.P., Kallen, R.J., Levy, S.E., Minshew, N.J., Ozonoff, S., Prizant, B.M., Rapin, I., Rogers, S.J., Stone, W.L., Teplin, S.W., Tuchman, R.F., Volkmar, F.R. (2000). Practice parameters: Screening and diagnosis of autism: Report of the quality standards subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 55, 468-479. Glascoe, F.P. (1998). Collaborating with parents: Using Parents' Evaluation of Developmental Status to detect and address developmental and behavioral problems. Nashville, Tennessee: Ellsworth & Vandermeer Press. Autism Services Proposal SJR 567 42 Glascoe, F.P. & Dworkin, P.H. (1993). Obstacles to effective developmental surveillance: Errors in clinical reasoning. Journal of developmental and behavioral pediatrics, 14, 344-349. Gordon, C.T. (2000). Commentary: Considerations on the pharmacological treatment of compulsions and stereotypies with serotonin reuptake inhibitors in pervasive developmental disorders. Journal of Autism and Developmental Disorders, 30, 437-438. Guralnick, M.J. (1998) Effectiveness of early intervention for vulnerable children: A developmental Perspective. American Journal of Mental Retardation, 102, 319-345. Hurth, J. Shaw, E., Izeman, S.G., Whaley, K., Rogers, S.J. (1999). Areas of agreement about effective practices among programs serving young children with autism spectrum disorders. Infants and Young Children, 12, 17-26. Ireton, H. (1992). Child Development Inventory. Minneapolis, MN: Behavior Science Systems. Jacobson, J.W., Mulick, J.A., and Green, G. (1998). Cost-benefit estimates for early intensive behavioral intervention for young children with autism—general model and single state case, Behavioral Interventions, 13, 201-226. Jarbrink, K., Knapp, M. (2001) The economic impact on autism in Britain, Autism, 5, 7-22. King, B.H. (2000). Pharmacological treatment of mood disturbances, aggression and selfinjuring in persons with pervasive developmental disorders. Journal of Autism and Developmental Disorders, 30, 439-445. Lovaas, O.I. (1987). Behavioral treatment and normal intellectual and educational functioning in autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9. Majnemer, A. & Rosenblatt, B. (1994). Reliability of parental recall of developmental milestones. Pediatric Neurology, 10, 304-308. McDougle, Kresch, & Posey, (2000). Repetitive thoughts and behavior in pervasive developmental disorders: Treatment with serotonin reuptake inhibitors. Journal of Autism and Developmental Disorders, 30, 427-435. McEachin, J.J., Smith,T., & Lovaas, O.I. (1993). Long term outcome for children with autism who received early intensive behavioral treatment. American Journal on Mental Retardation, 97, 59-372. M.I.N.D. Institute, University of California, Davis. (2002). Report to the legislature on the principal findings from the epidemiology of autism in California: A comprehensive pilot study R. S. Byrd, MD, MPH, principal investigator. Autism Services Proposal SJR 567 43 Minshew, N., & Rattan, A. (1992). The clinical syndrome of autism. In S. Segalowitz & I. Rapin (Eds.) Handbook of neuropsychology: Child neuropsychology (Vol. 6, pp.401-441). Amsterdam, The Netherlands: Elsevier. New York State Department of Health Early Intervention Program. (1999). Clinical Practice Guideline: Autism/Pervasive Developmental Disorders. New York: New York State Department of Health. Office of the Surgeon General. (1999). Mental health: A report of the Surgeon General. Washington, D.C.: US Government Printing Office. Romanczyk, R., Matey, L., & Lockshin, S.B. (1994). The children’s unit for treatment and evaluation. In Preschool Programs for Children with Autism by S. L. Harris and J. S. Handleman. Austin, TX: Pro-Ed Publishers. Robins, D.L., Fein, D., Barton, M.L, & Green, D.A. (2001). The modified checklist for autism in toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31, 131-144. Ruble, L.A., Heflinger, C.A., Renfrew, W., & Robson, D. (in press). Medicaid managed care and children with autism spectrum disorders. 15th Annual Research Conference Proceeding on A System of Care for Children's Mental Health. Strain, P.S., Wolery, M., & Izeman, S. (1998). Considerations for administrators in the design of service options for young children with autism and their families. Young Exceptional Children. 8-16. Tuchman, R. (2000). Treatment of seizure disorders and EEG abnormalities of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 30, 485-489. Autism Services Proposal SJR 567 44 APPENDIX A Senate Joint Resolution Letter (SJR 567) Letter from the Tennessee Commission of Children and Youth to Dr. Joe McLaughlin Letter from the Tennessee Commission of Children and Youth to Dr. Fredia Wadley Autism Services Proposal SJR 567 45 Autism Services Proposal SJR 567 46 Autism Services Proposal SJR 567 47 Autism Services Proposal SJR 567 48 Autism Services Proposal SJR 567 49 Autism Services Proposal SJR 567 50 APPENDIX B List of Participants Autism InterAgency Study Group Membership State Workgroup (held approximately weekly from Sept. 11th – Dec. 11th) co-chairs: Patti van Eys, Ph.D. Children’s Health Initiative Joe McLaughlin, Ph.D. Children’s Health Initiative Brenda Bledsoe Department of Education Tennessee Early Intervention System Denny Dukes*, MSSW Associate Director UT Children’s Mental Health Services Research Center UT School of Social Work Karen Edwards, Ph.D. Psychologist Consultant to Department of Mental Health and Developmental Disabilities Gayle Feltner, MS Education & Family Services Director Division of Mental Retardation Services Kacie Fitzpatrick, MA Child Health Advocate Implementation Team Department of Health Patti Killingsworth, BS Disabilities Coordinator Office of Health Services/Bureau of TennCare Paige Kisber UTK * parents of a child(ren) with autism Autism Services Proposal SJR 567 Michael McSurdy, MA Director of Foster Care Services Department of Children Services Michael Myszka, Ph.D. Psychologist, Medical Director’s Office Bureau of TennCare Linda Oneal, J.D. Executive Director, Tennessee Commission on Children and Youth (TCCY) Steve Petty, BS Legislative Specialist TCCY Kim Rush, Ed.S. Mental Health Specialist III Department of Mental Health and Developmental Disabilities Debbie Shahla, MA MH/DD planner Department of Mental Health and Developmental Disabilities Sara Smith*, MS Adolescent Health Director Maternal and Child Health Section Department of Health Ned Solomon, BA Director, Partners in Policymaking Tennessee Council on Developmental Disabilities Laura Stewart, M.T.S., J.D. Executive Assistant to the Commissioner Health Care Advocacy, Department of Children Services Linda Vandermeer, M.S. Autism/Behavior/Programs & Services Director Department of Education; Division of Special Education * parents of a child(ren) with autism 51 Autism Services Proposal SJR 567 Pat Wade Director of Children’s Program Outcome Review Team Tennessee Commission on Children and Youth Wanda Willis, Executive Director Tennessee Council on Developmental Disabilities Diana Yelton, MSSW, MA Department of Children’s Services Program Coordinator Health Care Advocacy Dept. of Children’s Services Provider Workgroup (met approximately every other week from Sept. 17- Dec. 11) co-chairs: Patti van Eys, Ph.D.; Joe McLaughlin, PH.D. The Children’s Health Initiative William Allen, Ph.D. Cherokee Behavioral Health Services Debbie Cate, East Tennessee Regional Resource Center Department of Education Tom Catron, Ph.D. Vanderbilt University Center of Excellence Larry Faust, MD Implementation Team, Department of Health Tim Goldsmith, Ph.D. Director of Clinical Services,Youth Villages (Memphis TN base; statewide services) Al Hardy, MA TEIS service coordinator (Lawrenceburg, TN) Gaye Hardy, MA Director, Unique Personalities (Lawrenceburg, TN) *parents of a child(ren) with autism 52 Autism Services Proposal SJR 567 Jennifer Nietfeld, MA Director, SAIL (Strategies for Autism through Individualized Learning) Marcy Rehse, MA educational consultant (private practice) Dana Simpson, MA Southern Middle TN Children’s Coalition (Franklin County) Behavioral Consultant (Warren County) Janet Todd, Ph.D. UT-Boling Center; Center of Excellence (Memphis) Parent/advocate work group (met once as a group; some participated in later meetings with the State and Provider work groups) co-chairs: Patti van Eys, Ph.D. The Children’s Health Initiative Joe McLaughlin, Ph.D. The Children’s Health Initiaitve Dena Brown, MA, parent Janet Curry, parent (Giles County) Tammie Fleming (statewide advocate) Tennessee Voices for Children Debi Haney, parent (Knox County) John McCaskill, parent (Henderson County) Teri Phillips, parent (Rutherford County) Jeff Romanczuk, MS parent (Sevier County) Special Educator Janet Shouse, parent (Williamson County) Autism Society of Middle Tennessee 53 Autism Services Proposal SJR 567 Consultants (did not attend the formal meetings described above) Behavioral Health Advisory Committee to the Bureau of TennCare Chair: Robert Atkins, MD Psychiatrist, Shaller Anderson Steve Camarata, Ph.D. The Kennedy Center, Vanderbilt University Anne Garfinkle, Ph.D The Kennedy Center, Vanderbilt University Jerry Heston, MD Director, Division of Child Psychiatry UT College of Medicine (Memphis) Quentin Humberd, MD Pediatrician, Premier Medical Group, Clarksville Gina Hummel, Ph.D. East Region Center of Excellence (Knoxville) Susan McGuire, MD. Director, SouthEast Region Center of Excellence (Chattanooga) Robin McWilliam, Ph.D. Child Development Center, Vanderbilt University Fred Palmer, MD Director, UT Boling Center for Developmental Disabilities (Memphis) Cindy Perry, MS Executive Director, Select Committee on Children and Youth Tennessee General Assembly Andres Pumariega, MD Director, ETSU Center of Excellence (Johnson City) Mary Schaffer, MS Speech and Language Pathologist, Vanderbilt; Bill Wilkerson Center Lisa Ruble, Ph.D. University of Louisville The Steering Panel for Children with Special Health Needs Chair: Fredia Wadley, Commissioner of Health 54 Autism Services Proposal SJR 567 Wendy Stone, Ph.D. Diroector, TRIAD, Vanderbilt University Mark Wolery, Ph.D. The Kennedy Center, Vanderbilt University Ruth Wolery, Ph.D. The Kennedy Center, Vanderbilt University 55 Autism Services Proposal SJR 567 56 APPENDIX C Estimated Prevalence Rate of Children with Autism Spectrum Disorders by Tennessee County County Anderson Bedford Benton Bledsoe Blount Bradley Campbell Cannon Carroll Carter Cheatham Chester Claiborne Clay Cocke Coffee Crockett Cumberland Davidson Decatur DeKalb Dickson Dyer Fayette Fentress Franklin Gibson Giles Grainger Greene Grundy Hamblen Hamilton Hancock Hardeman Hardin Hawkins Haywood Henderson Henry Hickman Houston Humphreys Jackson Jefferson Johnson Knox Estimated Prevalence Rate of ASD Total 2 of every 3 of every Population 1000 1000 Birth - 18 children children 17,931 36 54 9,080 18 27 3,811 8 11 2,401 5 7 23,475 47 70 19,874 40 60 9,196 18 28 3,131 6 9 7,171 14 22 11,460 23 34 9,940 20 30 3,637 7 11 7,167 14 22 1,626 3 5 7,462 15 22 12,440 25 37 3,508 7 11 9,405 19 28 137,726 275 413 2,370 5 7 3,563 7 11 11,953 24 36 9,896 20 30 8,233 16 25 3,865 8 12 8,855 18 27 12,077 24 36 7,460 15 22 4,555 9 14 13,283 27 40 3,535 7 11 13,137 26 39 74,162 148 222 1,625 3 5 7,152 14 21 6,433 13 19 11,379 23 34 5,634 11 17 5,653 11 17 6,597 13 20 4,803 10 14 1,818 4 5 4,081 8 12 2,043 4 6 8,938 18 27 3,387 7 10 89,449 179 268 Autism Services Proposal SJR 567 Lake Lauderdale Lawrence Lewis Lincoln Loudon Macon Madison Marion Marshall Maury McMinn McNairy Meigs Monroe Montgomery Moore Morgan Obion Overton Perry Pickett Polk Putnam Rhea Roane Robertson Rutherford Scott Sequatchie Sevier Shelby Smith Stewart Sullivan Sumner Tipton Trousdale Unicoi Union VanBuren Warren Washington Wayne Weakley White Williamson Wilson TOTAL 57 1,509 7,047 10,847 2,562 7,741 8,985 4,613 23,764 6,957 6,846 18,975 11,230 5,751 2,109 8,399 34,826 1,239 4,501 7,667 4,344 1,770 1,036 3,132 14,512 6,655 11,082 14,700 45,554 5,445 2,606 14,901 260,019 4,051 4,206 33,846 32,235 14,695 1,565 3,422 4,086 1,114 8,951 22,499 4,169 8,110 5,371 30,840 22,926 3 14 22 5 15 18 9 48 14 14 38 22 12 4 17 70 2 9 15 9 4 2 6 29 13 22 29 91 11 5 30 520 8 8 68 64 29 3 7 8 2 18 45 8 16 11 62 46 5 21 33 8 23 27 14 71 21 21 57 34 17 6 25 104 4 14 23 13 5 3 9 44 20 33 44 137 16 8 45 780 12 13 102 97 44 5 10 12 3 27 67 13 24 16 93 69 1,399,787 2,797 4,200 Autism Services Proposal SJR 567 58 APPENDIX D Blank Survey Form from the 2002 SJR 567 Workgroup Documents form Prior State Workgroups Regarding Autism Informal Working Paper by Lisa Ruble, Ph.D., Vanderbilt University, TRIAD Autism Services Proposal SJR 567 59 SURVEY FOR THE LEGISLATURE Survey on Services for Children with Autism Spectrum Disorders: A Report to the Tennessee Legislature The Children’s Health Initiative needs your input for an imminent legislative proposal regarding services for Tennessee children with Autism Spectrum Disorders. Our goal is to communicate to the legislature the current status of such services and to propose a more adequate service array and delivery system. If you are a resident of Tennessee, please take a few minutes to fill out this survey. County of residence: ___________________________ 1. 2. 3. 4. a. b. 5. a. b. Please put a check mark where applicable: Are you a: a. ___ parent of a child with autism b. ___ Educational provider c. ___mental/behavioral health provider d.____ medical provider e. ___ policy maker f. ___ other ____________ (list) If you are a parent, how old is your child(ren)? ___________ If you are a provider, how long have you been in the field? _______ If you are a provider, have you had autism specific training? ___yes ___no If yes, please specify: _____________________________________________________________________________________________ _________________________________ If yes, what services do you now provide?____________________________ Rate (check) the following services in terms of their availability and ability to serve children with autism and their families in your geographical region: Speech/Language ____Adequate ____Inadequate Explain if needed: _____________________________________________________________________________________________ _________________________________ Educational Services ____Adequate ____Inadequate Explain if needed: _____________________________________________________________________________________________ _____________________________________________________________________________________________ ______________________________________________________________________________c. Systems coordination: ____ Adequate ____Inadequate Explain: _____________________________________________________________________________________________ _______________________________________ d. Mental Health/Behavioral Health: _____Adequate ____Inadequate Family Counseling : _____Adequate ___Inadequate Sibling counseling: _____Adequate ___Inadequate Behavioral Interventions _____ Adequate ___Inadequate Psychiatric Medications _____ Adequate ___ Inadequate TURN PAGE OVER Explain any of above regarding behavioral health services: _____________________________________________________________________________________________ _______________________________________ __________________________________________________________________ _____________________________________________________________________________________________ _____________________________________________________________________________________________ ____________ e. Medical Services (excluding psychiatric) ____ Adequate ___Inadequate Autism Services Proposal SJR 567 60 Explain: _____________________________________________________________________________________________ _______________________________________ f. Other family services: ___Adequate __Inadequate Respite ___ Adequate ___Inadequate Home modifications ___Adequate __Inadequate Personal Assistance/Care ___Adequate __Inadequate Explain: _____________________________________________________________________________________________ _______________________________________ g. In general, what do you see as most needed in your geographical area? __________________________________________________________________ _____________________________________________________________________________________________ _____________________________________________________________________________________________ ____________ h. In general, what do you think are the main barriers to adequate services for children with autism in Tennessee? __________________________________________________________________ _____________________________________________________________________________________________ _____________________________________________________________________________________________ ____________ i. What do you think is the best service(s) in your area? What has been most helpful to you? __________________________________________________________________ _____________________________________________________________________________________________ _____________________________________________________________________________________________ __________ Thank you for helping us with this survey. You may leave it in the basket marked “Return Legislative Survey” out in the display area, or you may FAX it to: 615-532-1383 (attn: CHI). If you want to take the survey home for others to fill out and FAX back, please do so! The Children’s Health Initiative 706 Church Street; Dr. Bldg. 5th floor Nashville, TN 37247 615-253-5503 Autism Services Proposal SJR 567 61 Comments to the Select Oversight Committee on TennCare Regarding SB 235/HB 1021: Behavioral Health Services for Autistic Children Date: April 19, 1999 Presented by: Executive Director, Cindy Perry Select Committee on Children and Youth Tennessee General Assembly Background • • • • • • • • The Select Committee on Children and Youth (SCCY) conducted two (2) hearings during 1998 on issues and concerns related to special education service delivery for disabled children. Autism was discussed extensively as a part of those hearings. Findings indicate that autism is a neurological disorder that occurs in the brain. Specifically, autism affects individuals’ behavior and their ability to learn because of how the disorder affects the brain. There is no medical cure for autism, although, clinical research is necessary and on-going. The onset of autism occurs in children, almost always between 0-3 years, and very often between 18 and 30 months. Diagnosis of the disorder is typically made between 3 and 5 years of age. The incidence of autism is around 1 per 1,000 persons. Autistic children’s ability to develop socially, emotionally, and cognitively is compromised by this disorder. Most importantly, the autistic child’s ability to learn and to be educated is directly compromised by this disorder. Two (2) factors related to rehabilitating and teaching autistic children are {1} the level to which the disorder is manifested in the person (i.e. severity) and {2} the level of treatment and intervention provided (i.e. type, intensity and duration). The good news is that autistic individuals can be rehabilitated and the effects of the disorder on their lives can be treated, thus improving their quality of life and functioning in their environment. Timing of intervention services is a critical factor for autistic children. For all human beings, 0-5 years old is the prime window of opportunity for learning essential life skills. In fact, the emerging bank of knowledge about human brain development is indicating that the first 33 months of life (including the nine month pre-natal period) is the most critical period of human beings’ potential to live and learn functionally. Of relevance to this public policy discussion is that there is no solid evidence to support that the window of opportunity to learn is significantly different for autistic children than for their non-autistic cohort. Therefore, like with all children and especially with children who are in any way at-risk, early identification of deficits and prompt intervention to rehabilitate them while in the high-impact learning stage of life is good public policy. During childhood and adolescence, the business of children is getting educated. The education of disabled children affected by autism should be linked to the overall efforts to rehabilitate them from the effects of the disorder. Therefore, with regard to public service and support for children, it is important to frame interventions and Autism Services Proposal SJR 567 62 strategies against the backdrop of the public schools because that is the natural environment of children. Factors Effecting the Response to Autism • Because there are many “unknowns” in understanding and managing autism, and because the response to intervention is very individualized, it is currently not possible to effectively predict the outcomes and establish standardized treatment protocols for intervening with autistic persons, especially children. • There is, however, serious debate in the clinical and the public policy arenas about how the modifying and controlling of conditioning (teaching) is best done to improve the overall well-being of autistic people. Various models exist for the treatment and rehabilitation of autism. It is very important to note, however, that traditional therapeutic models and psycho-analytical approaches in service delivery do not work effectively with autism. • In the public policy arena, however, the debate is really about whether autism is a medical condition and, therefore, health care systems should pay for care and service. Or is autism a learning problem and, therefore, education should pay for care and service. The reality is that in terms of total health and well-being and the long-term cost impact on society, there is medical necessity coupled with educational responsibility in order to rehabilitate and teach autistic children. • TennCare Standard Operating Procedure #019, dated January 1,1994, addresses the subject of MCO Responsibility to Provide Medical Treatment to Children Receiving Special Education Services. It states in part: "In the case of a TennCare-eligible child identified as eligible for special education as part of the Individuals with Disabilities Education Act who is also identified as having "related services" needs that must be met in order for the child to benefit from special education, TennCare Managed Care Organizations (MCOs) are required to provide TennCare covered services for TennCare children despite the inclusion of such services in the child's individualized education program. ...Services such as occupational therapy, physical therapy, speech therapy and any other TennCare covered services are the responsibility of the MCO." (Copy of TSOP 019 is attached.) • Schools need medical expertise to effectively work with third-party payor sources to assure that all disabled students receive the necessary and appropriate services based on high quality individualized education plans (IEPs), and that appropriate funding streams are utilized to cover the costs of said services. The Department of Health has a small-scale program, Project TEACH, which is providing medical consultation to LEAs to accomplish effective liaison with MCOs and BHOs. (Handout is attached.) Comments on SB 235/HB 1021 As proposed, this bill sets forth a specific sub-group of disabled children as eligible for TennCare reimbursement of behavioral services. It appears that current code and administrative procedure already require this for the total population of disabled children, as T.C.A. 71-5-107(a)(10) currently states "Medical screening, diagnostic and treatment services of eligible categorically connected individuals under twenty-one (21) years of age." And, administrative operating procedure of the Bureau of TennCare (TSOP #019) Autism Services Proposal SJR 567 63 requires coordination of effort between schools and managed care organizations to assure delivery of and payment for services for TennCare eligible disabled children. So the question is not "Should we make autistic children eligible for behavioral health services?" But rather "How shall we assure that autistic children do in fact get behavioral health and medical services that are expertise-based, and of an intensity and duration to reasonably expect improved functioning and well-being?" • • • Expand the capacity of schools to obtain medical expertise in educational planning for disabled children. Examine the effectiveness of Project TEACH through a study of the utilization of the program by LEAs, and the cost assignment outcomes that DOH staff involvement in determination of pay sources has yielded, i. e. how much the schools have paid from their budgets and how much cost has been assigned to MCOs and BHOs. Assure that with the Bureau of TennCare's movement from Department of Health to Department of Finance and Administration, the purpose and operation of Project TEACH is maintained. An expert in the field of autism for purposes of educating or treating an autistic child should have at least five (5) years of experience and involvement with the population, with documented emphasis and effort to understand various modes and models of rehabilitation and teaching of autistic children from both the medical and educational arenas. TennCare reimbursable services should be delivered by professionals meeting this level of professional development; MCO provider networks should include such expertise. Additionally, public schools should strive to have supervision of all staff working with autistic children done by school personnel meeting this level of professional development. Autism Services Proposal SJR 567 64 Autism Task Force Summary of Residential/Respite Services for Autism Betty Boner, Barb Brent, & Judy Regan June 4,1999 Residential Services for Autistic Children: Services: 1. Education: Education provides limited residential programs for autistic child (i.e., Rainswood) 2. MR Waiver: For those who qualify, MR will provide homes for individuals who require additional support. MR usually tries to provide in-home services prior to moving a child out of their home. MR always tries to place a child in a home setting. 3. BHO: BHOs provide residential psychiatric care for these individuals who are dually diagnosed if their mental health needs require this level of Care. 4. DCS: DCS provides services for those children in their custody who require residential services. Conclusion: MR offers quality residential services for autistic children who can be maintained in a home setting. However, many times several questions may occur whose answers limit the services: • Does the individual qualify for services under the MR Waiver/State funded services? • Are there enough providers available: to) provide the residential services? • Is there enough money to provide the residential services? • Where is the individual on the waiting list? Respite Care for Autistic Children: Services: I. Education: Currently Education does not provide respite care. 2. MR Waiver/State Funds: Some grants exist for state funded respite services. In addition, some respite services are available through the waiver. 3. BHO: BHOs provide emergency respite care for psychiatric conditions. 4. DCS: DCS provides respite services for those children in their custody. 5. TN Voices for Children: TN Voices provides respite. Specifics are unknown at this time. Conclusion: Respite care is provided mainly by MR. However, these services are limited by the above questions raised under residential care (i.e., funding, availability, waiting list, qualification.) Autism Services Proposal SJR 567 65 Service Needs of Families and People with Autism in Tennessee Lisa Ruble, Ph.D. January 2001 (DRAFT written by Lisa Ruble, Ph.D. when she was a part of the Vanderbilt University Medical Center, Division of Child Development, TRIAD) Autism is among the most complex neurodevelopmental disorders. According to the U.S. Department of Education (1999), autism is the largest growing low incidence disability in public schools (Figure 1) and the third most common developmental disability (Autism Society of America). Autism affects more than 2,000 children and 2,800 adults with autism in Tennessee (Table 1). The Tennessee Department of Education reported a 3-fold increase in number of students with autism since 1992, from 367 to 967 (out of an expected 1,800) (Figure 2). The Office of Vocational Rehabilitation reported serving 74 adults (out of an expected 2,800) with autism in 2000. It is expected that more children and adults will be diagnosed with autism as professionals become more knowledgeable. The number of children receiving services and the types and costs of services provided by agencies such as the Department of Mental Health and Developmental Disabilities (DMHDD), TennCare, and Children's Special Services are unknown. A recent estimate of the lifetime costs associated with autism is 4.35 million per person (Autism Society of America; Malt by, 2000). Types of Essential Services for Families and Individuals with Autism and TN Agencies Responsible for Providing Services Table 2 describes the various services needed by families and people with autism and the corresponding state agencies responsible for such services. Case management, respite care, in-home personal assistance, and other therapies like speech and language therapy, behavior management therapy, parent training, and occupational therapy are necessary for optimal growth and development of children with autism. In Tennessee, the Department of Mental Health and Developmental Disabilities is the primary agency responsible for providing necessary services for families. DMHDD offers a federally funded Medicaid-Waiver Program and a state-funded Family Support Program. Parents must wait years in order to receive services from DMHDD. Children who receive TennCare are able to receive many services; however, it is unlikely that many receive the services they are eligible for under the Early Periodic Screening Diagnosis and Treatment (EPSDT) requirements as I have not yet met a family who receives case management services or in-home behavioral support or personal assistance. The Department of Children’s Special Services (CSS) also provides a limited number of services, including case management. Again, I have not worked with any families who receive assistance from CSS. Autism Services Proposal SJR 567 66 Summary of Accessibility of State Services Unfortunately, families have to wait several years to receive most of the services available through DMHDD’s Medicaid-Waiver and Family Support Programs. My experience with TennCare indicates that the special needs of children with autism is unknown as almost all families receive no case management or EPSDT services designed to promote the child’s development (such as in-home personal assistance). Finally, Children’s Special Services, which reportedly provides services to children with autism, is also difficult to access. I currently see 20 to 40 children with autism a month, and for those living at home, none have a case manager, in-home personal assistance, or respite care. Evidence of Services Needs The service needs of children, adolescents, and adults with autism and their families are unknown in Tennessee. Only anecdotal evidence is available that illustrates the needs and gaps in services for autism. Below are examples I have personally encountered in my work as a clinical psychologist. Issue: Lack of Case Management – Example from Franklin County A school system from Franklin County called about a child who was in danger of hurting himself. The child was receiving case management through a local mental health agency. But as soon as the autism diagnosis was made aware to the agency, the case management service was dropped. The family was told case management services can not be used for children with autism. Issue: Lack of Residential Options or Crisis Options – Example from Clarksville and Maury County A grandmother, who had custody of her grandson with autism, requested residential placement for her grandson. She was told by DMHDD that services were not available and that only crisis situations were given priority. She completed the application for the Medicaid-Waiver Program, but learned several months later that the application was never forwarded to Medicaid. She had to repeat the application process. In the meantime, she was advised by DMHDD to give up custody of her grandson in order to receive services. She refused this option. Eventually, she experienced medical problems and was hospitalized, also her son (not the child's father) committed suicide. At this point, the grandmother was unable to care for the child and contacted the local TV station. After these episodes, the child was then placed on the Medicaid waiver and moved into a supported living environment. A mother from Maury County reported that she was afraid of her son, and his behavior was getting out of control. She wanted to place him in a hospital for a medication evaluation. The mother called the only Middle TN inpatient unit that works with individuals with autism ( University Hospital of Lebanon) and was told that they only take adults. Comment: Several families have had similar experiences. They are in crisis, have received no in-home personal assistance or case management, and have nowhere to turn. One family did give their child up to the Department of Children's Services in order to get help. This child is now inappropriately placed in a mental health facility and his Autism Services Proposal SJR 567 67 behavior has deteriorated. He has been removed from his local school due to challenging behaviors. Medication is being used to treat behaviors rather than a positive behavior support plan. When families contact DMHDD, they are told that the waiting lists are long and that it will be years before they receive services. Many families feel hopeless. The impact of a lack of services on families and the costs that families and the State of Tennessee pay out of pocket for emergency procedures are unknown. Issue: Lack of Respite Care- Example from Davidson County and many rural counties {Blount County, Hardin County, Franklin County) The Tennessee Respite Network, which is part of Tennessee Voices for Children, no longer provides financial subsidy for respite care for children with autism. TN Voices for Children does not work with children with autism. The Family Support Programs have long waiting lists. Families have to hire their own providers. No training on autism for respite providers is offered in TN. Issue: Lack of TennCare (EPSDT) Services -Example from Davidson County There is a Federal Medicaid Law stipulating the services available to children with disabilities under EPSDT guidelines. No families have been able to access the range of services described in EPSDT. One family who lives in Davidson County was unable to acquire EPSDT services despite this law. The mother, who has a son with autism, has a neuromotor condition that makes her unable to perform physical activities. She is unable to cook, care for the children, clean, etc. The father has to do all the home-making activities. When he has to take time off of work to care for his family and take his wife and sons to appointments, he loses wages. The family contacted TennCare for EPSDT services for case management and in-home personal assistance. The TennCare employee who did not know what EPSDT was then referred the mother to a mental health center. When the mother contacted the mental health center she was told that they don't work with children with autism. Another example comes from Davidson County .A 4-year child suspected of having autism was on the inpatient unit in a psychiatric hospital. The family and a family advocate were concerned that if the child was diagnosed with autism, he would receive no services. The advocate, Tony Garr, of the TN Health Care Campaign reported that he has worked with many families of children with autism and that the needs of these children are not addressed when they have an autism diagnosis (children with severe emotional disturbance (SED), have many options in TN through TN Voices for Children and local mental health centers). A clinical psychology doctoral student who was doing a practicum in a psychiatric facility was encouraged by her supervisors to not diagnose autism as services for this diagnosis was not reimbursed by insurance companies. Issue: Lack of Services from Private Insurance -Examples from Davidson and Williamson Counties Many families want services such as speech and language therapy, behavior management therapy, or social skills training. Some insurance companies deny any coverage when the child is diagnosed with autism, Asperger's syndrome, or Pervasive Developmental Disorder- Not Otherwise Specified -all autism spectrum disorders. One child was denied any health care coverage due to his diagnosis of autism. Autism Services Proposal SJR 567 68 Recommendations Our biggest recommendation is for a comprehensive description of current needs and gaps in services that can be used to develop a State-Wide autism plan. For the current legislative session, the Autism Society of Middle TN has generated the following legislative initiatives: Legislative Initiatives TennCare EPSDT Services Private Services Personnel Training Social Services Personnel Training State Autism Plan State Autism Center Description of Legislation Autism Services Proposal SJR 567 69 APPENDIX E Exclusionary Language Regarding Developmental Disabilities Found in the Contract Between TennCare and the BHO (Compiled by an informal workgroup headed by Patti van Eys, Ph.D.) The TennCare contract with the BHO excludes Mental Retardation/Developmental Disabilities (MR/DD) from the category of covered mental illnesses as defined below, but explicitly includes coverage of behavioral health services categorically to special populations. The definitions [page A8] that excludes MR and DD: • Mental Health Services – Means the diagnosis, evaluation, treatment, residential personal care, habilitation, rehabilitation, counseling or supervision of persons who have a mental illness. • Mental Illness – Means a psychiatric disorder, alcohol dependence, or drug dependence, but does not include mental retardation or other developmental disabilities. The TennCare contract language that excludes MR/DD from the BHO states [§2.6.2.5] that “Except as otherwise required in this CONTRACT, the Contractor shall not be responsible for coverage of treatment services to any Participant when the need for treatment services is the result of factors other than the Participant’s mental health or substance abuse treatment needs.” The contract language that includes specific behavioral services for people with MR/DD states [§2.6.2.4] “The Contractor shall insure it provides accessible and available services covered under this CONTRACT for all Participants, including those belonging to special groups. These special groups include, but are not limited to, individuals with physical disabilities such as hearing loss or vision impairment [§2.6.2.4.1]; and dual diagnosed individuals (those with diagnoses of mental illness as well as diagnoses of mental retardation or substance abuse) [§2.6.2.4.2].” Diagnoses excluded in the BHO contract remain the responsibility of the TennCare Bureau. Behavioral health contribution to the treatment of patients with non-covered diagnoses is typically in the context of acute stabilization of behavioral decompensation requiring inpatient psychiatric hospitalization, and consultation-liaison services, either inpatient or outpatient. Just as a psychiatrist or other behavioral clinician might consult on a patient with any medical illness, and could treat behavioral symptoms on a consulting basis, so could the BHO provide behavioral services to people with MR/DD with regard to their behavioral symptoms. Overall treatment accountability remains with the TennCare Bureau or with whatever Agency to which the Bureau has delegated responsibility for providing EPSDT-mandated MR/DD services. Likewise, a person with MR/DD could have a co-occurring behavioral disorder, whether it is a psychiatric condition such as depression, or an addictive disorder such as alcoholism. These cooccurring conditions would be subject to BHO treatment regardless of the MR/DD diagnosis. These service recipients would have access to the full continuum of behavioral health services according to BHO medical necessity criteria. MR/DD status may require clinicians/treatment programs with particular expertise, but otherwise access to services is no different for this population relative to similar clinical presentation in people without MR/DD. Autism Services Proposal SJR 567 70 APPENDIX F Early Intervention Federal Legislation: Congress recognized both the preexisting state diversity and the need to coordinate (early childhood intervention) services across agencies when it crafted the legislation that created the Early Intervention Program for Infants and Toddlers with Disabilities (formerly known as Part H and now Part C of the Individuals with Disabilities Education Act of 1990 [IDEA]). The legislation required that states identify a lead agency to administer the program, develop a definition for developmental delay, and decide whether they would include the “at-risk of disability” category. To address the coordination of multiple agencies involved in service delivery, states were required to create an Interagency Coordinating Council (ICC) and provide service coordination to each family receiving early intervention services. 1 The goal of building an interagency system is a central idea in the Part C legislation, and the federal legislation provided states with funds to build coordinated, interagency systems of early intervention services. However, there can be significant variation across states in the systems they build. Required components for all state systems under federal statute and regulations: • • • • • • • • • • • 1 Maintaining a central directory of information Implementing a public awareness program Maintaining a comprehensive system of childfind Providing for evaluation and assessment of children Development of Individualized Family Service Plans (IFSP) Contracting, or otherwise arranging, for services Maintaining a comprehensive system of personnel development Maintaining provisions for implementation of procedural safeguards Supervision and monitoring of programs and safeguards Collecting and maintaining data on the system Maintaining an Interagency Coordination council (ICC) by Donna Spiker, Kathleen Hebbeler, Mary Wagner, Renee Cameto, Patti McKenna ( 2000) Topics in Early Childhood Special Education, Pages 1-22. Autism Services Proposal SJR 567 71 Tennessee’s Early Intervention System: T.E.I.S. In Tennessee, Public Law 105-17, Part C, is a segment of the larger law umbrella, IDEA (Individuals with Disabilities Education Act). This section, Part C, entitles infants and toddlers with disabilities rights to intervention. The law lists the processes and services that Tennessee is required to follow and provide through early intervention services. These processes are in place to protect the family as well as the child during the early intervention period. TEIS works with infants and toddlers from birth to three years of age. TEIS operates nine district level “points of entry” and a statewide toll free number to assist families. Once a referral is made, a service coordinator makes a home visit to conduct a screen or evaluate the child and discuss the need for additional evaluations, if needed, to determine eligibility. TEIS uses this first opportunity with the family to explain their rights under IDEA. When eligibility is established, an Individual Family Service Plan (IFSP) must be written prior to any service provision. A team of professionals and the parents convene to write a plan for the child and family based on educational and medical needs of the child. This plan will also include the parents’ concerns and priorities. The service coordinator is the family’s liaison to services. This person will coordinate with providers and professionals that are critical to the child’s development, thus creating the family’s team. It is through this team’s effort that a plan of service is developed, coordinated, and implemented. When a child turns three, intervention services are provided by the local education agency (LEA). Prior to the third year, the IFSP should be adapted to plan for the transition from TEIS to the LEA. This transition process should address the future issues and needs of the child and to allow for a smooth transition from one program to the next. TEIS Services: • • • • • • • • • • • • Screening, evaluation, and assessment Service coordination Family training and counseling and home visits Special instruction (child) Audiology Speech pathology Physical and occupational therapy Vision services Social work services Transportation Assistive technology Medical services for diagnostic purposes only Autism Services Proposal SJR 567 • • Health services when necessary to allow child to benefit from other Early Intervention Services Implementation of procedural safeguards Parents are afforded several rights under the law for protection. A partial list follows: • The right to informed consent • The right to written prior notice • The right to a multidisciplinary evaluation and an assessment of the child • The right to review records • The right to mediation, and • The right to services in a natural environment 72 Autism Services Proposal SJR 567 73 APPENDIX G State definition and eligibility criteria for Autism: Department of Education: Special Education 1. Definition (State Board of Education Rule 0520-1-9-.01) a. “Autism” means a developmental disability, which significantly affects verbal and nonverbal communication and social interaction, generally evident before age three (3), that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experience. The term does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in this section. b. After age three (3), a child could be diagnosed as having autism if the child manifests the above characteristics. c. The term of autism also includes students who have been diagnosed with an Autism Spectrum Disorder such as Autism, Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS) or Asperger’s Syndrome when the child’s educational performance is adversely affected. Additionally, it may also include a diagnosis of a Pervasive Developmental Disorder such as Rett's or Childhood Disintegrative Disorder. Autism may exist concurrently with other areas of disability. 2. Eligibility Standards a. Children with autism demonstrate the following characteristics prior to age 3: (1) difficulty relating to others or interacting in a socially appropriate manner; and (2) absence, disorder, or delay in verbal and/or nonverbal communication; and (3) one or more of the following: (a) insistence on sameness as evidenced by restricted play patterns, repetitive body movements, persistent or unusual preoccupations, and/or resistance to change; and/or (b) b. unusual or inconsistent responses to sensory stimuli. The characteristics as defined above are present and cause an adverse effect on educational performance in the classroom or learning environment. 3. Evaluation Procedures a. Evaluation shall include the following: Autism Services Proposal SJR 567 74 (1) parental interviews including developmental history; (2) behavioral observations in two or more settings (can be two settings within the school); (3) physical and neurological information from a licensed physician, pediatrician or neurologist who can provide general health history to evaluate the possibility of other impacting health conditions; (4) evaluation of speech/language/communication skills, cognitive/developmental skills, adaptive behavior skills and social skills; and (5) documentation and assessment of how autism spectrum disorder adversely affects educational performance in the classroom or learning environment. 4. Evaluation Participants a. Information shall be gathered from the following persons in the evaluation of autism spectrum disorders: (1) the parent(s) or guardian of the child; (2) the child’s general education classroom teacher (with a child of less than school age, an individual qualified to teach a child of his/her age), (3) an appropriately licensed school psychologist, licensed psychologist, licensed psychological examiner (under the direct supervision of a licensed psychologist), or licensed psychiatrist; (4) a licensed physician, neurologist, pediatrician or primary health care provider; and (5) a certified speech/language teacher or specialist; and other professional personnel as needed, such as occupational therapist, physical therapist or guidance counselor. Autism Services Proposal SJR 567 75 APPENDIX H Applied Behavioral Analysis Definition and Explanations from: TRIAD Howard County Maryland Parent Proposal Reference Terms Applied Behavior Analysis (ABA): A general term that refers to a set of concepts, principles, and techniques used in the assessment, treatment, and prevention of problem behaviors. It involves the following components: direct measurement of behavior through systematic observation and recording; functional analysis of the causes of behavior; an emphasis on understanding and manipulating the antecedents of behaviors as well as the consequences; and the use of specific techniques to increase desirable behaviors, decrease undesirable behaviors, teach new skills, and promote generalization o f newly acquired skills across situations. ABA is not equivalent to Lovaas. Nor is it equivalent to discrete trial training. Discrete Trial Training (DTT): A specific ABA technique that is used to primarily teach new skills. It occurs in a oneto-one context in a location that is free from distraction. Discrete trial training is adultcentered, in that the adult determines the time, location, and content of the teaching activities. This approach involves breaking down the behavioral sequences into separate components and teaching one component at a time in a highly structured manner. The discrete trial consists of three main steps, SD-R-SR. The Discriminative Stimulus or SD is the instruction given by the adult, which triggers the Response or R from the student. And in turn, the adult provides positive or negative feedback, Stimulus Reinforcer or SR. Depending on whether the feedback was positive or negative, the student’s response will either increase or decrease respectively in the future. Each teaching episode usually involves the repetition of many discrete training trials. Taken from “TRIAD ABA Workshop Series Manual” TRIAD, 2002 Autism Services Proposal SJR 567 76 Howard County Maryland Parent Proposal Brief Description of Applied Behavioral Analysis (ABA) Programs2 Behaviorally-Based Intervention The most important change we feel needs to be made to HCPSS’s program for children with autism is the use of and rigorous training in ABA techniques. There is much evidence in favor of state-of-the-art implementations of Applied Behavior Analysis. These programs use various behaviorally-based methodologies including discrete trial therapy as a major part of an integrated program that first teaches children how to learn, continues by teaching them how to generalize their learning, and finally teaches them how to be part of society. Any behaviorally-based, intensive intervention program requires a high level of training for all staff working directly with the children, be it in the classroom setting or in one-onone situations. Without a specific focus on training in techniques of ABA – a focus which currently does not exist within the county - professional staff and temporary aides will be unable to implement the program necessary to educate young children with autism. This appendix has two parts: first, we give an overview of Discrete Trial-Based Applied Behavior Analysis programs. Second, we give specific curriculum information, showing how skills are taught in a progression of phases, and how generalization and peer interaction are phased in after the children can best use these learning opportunities. Discrete Trial-Based Programs Discrete trial therapy (DTT) is a specific teaching technique used to maximize learning. The technique consists of breaking down a skill into smaller parts, and then teaching one sub-skill at a time. Each teaching session involves numerous trials, with each trial having a distinct beginning (i.e., the instruction) and end (i.e., feedback). Each part of the skill is mastered before more information is presented. DTT is contrasted with “continuous trial” or more traditional methods of teaching which present large amounts of information before the child’s response is sought. In DT-based programs, children are presented with opportunities to learn necessary skills until they are performed successfully. Children are reinforced (rewarded/praised) for doing so, which provides motivation for the child to continue to learn. Therapists and paraprofessionals working with the children are trained to ignore negative behavior but to reinforce compliance and good behavior – “praise the best, ignore the rest”. Reinforcers include for example, candy, affection, free play, and are selected on the basis of what the child responds to best. The child’s success is closely monitored by data collection at various degrees of detail. Skills that the child has mastered {i.e., he/she is successfully performing with some stated frequency, (e.g., 80% or better)} are tested subsequently to ensure that the child continues 2 Early Intervention for Young Children with Autism Part II: A Parent Proposal; A Report to the Board of Education by the Howard County Chapter of the Autism Society of America 1998. Autism Services Proposal SJR 567 77 to be proficient in them. New tasks are constantly introduced to expand upon the skills already mastered. Once a student has mastered a particular skill, steps towards generalization begin immediately and are adapted to the specific needs of the child. The use of discrete trials is common to behaviorally-based methods in a variety of contexts. DT-based programs are often referred to as Applied Behavior Analysis (ABA) programs, although the term refers more generally to behavioral methods in a variety of circumstances. The term ABA is used here, however, to refer to a method of teaching designed to analyze and change behavior in a precisely measurable and accountable manner. In particular, the methodology can also be used in more natural circumstances as part of incidental learning. However, by themselves methods that rely solely on incidental learning (described as behavioral methods in naturally occurring situations, routines-based learning, and other milieu teaching techniques) will not necessarily provide sufficient learning opportunities for children with autism. Children often will not comply with a teaching activity (this is also the difficulty faced in educating children with autism within traditional special education programs). The Discrete Trial Therapy component of ABA programs is designed to ensure that children learn the tasks of the recommended curriculum. This is accomplished by persisting with teaching the tasks until they are mastered. Trained “therapists” learn a variety of techniques to deal with non-compliance and to get children back on task. In order to implement the discrete trial component and to generalize skills learned to other situations, an ABA program requires a large number of service hours. Full day programs are indicated, often with hours added at home. As the children progress, their education continues to require similar levels of service, but in the more natural environment of the classroom. Approach to Teaching The elements of the ABA programs we wish to implement are drawn from intervention techniques that have been described in Part I. They are: • • • • • • The use of Discrete Trial Therapy The use of a developmentally appropriate curriculum Generalization by teaching in progressively less structured settings. Use of functional assessments for challenging behaviors. Use of natural situations as teaching opportunities. Inclusive education. Depending on the needs and age of the child the program can require a range of placements, from a program in which one-on-one intervention predominates to one which stresses group instruction in the regular classroom. A major one-on-one, structured component is indicated for children who do not interact with other children well enough to benefit form a group setting. In center-based programs, the children are included, first in smaller then in larger groups, as their ability to interact and cope increases. The best practices thus indicate a ‘phased approach’ in which the degree of intensive one-on-one intervention is highest in the early stages, and more time is spent in inclusive settings later. Tasks to be learned are also introduced in phases and developmental levels, as explained in the curriculum section below. Autism Services Proposal SJR 567 78 ABA programs can be highly tailored to the individual needs of the child. They allow for a continuum of placements depending on those needs, and are tuned to the child’s learning pace. The usual necessity of performing at least some of the therapy at home— so that the skills learned in the program can be generalized to what is the most important setting the child must cope with—implies a great deal of parent involvement and awareness. For these reasons, these programs contain many if not all of the strategies found to be most successful in treating children with autism. Curriculum for ABA Programs Specific goals and objectives are established along a continuum of developmental milestones that begin with non-verbal imitation and continue to advanced conversation, peer socialization, and academic skills such as reading and math. An example of how an ABA program might proceed in its early stages is given in the flowchart on the next page. The developmental milestones or goals that make up a modern ABA program are those that typical children pick up effortlessly from their environment. We stress again that the autistic child must learn how to learn, beginning with very small and basic tasks, followed by increasingly complex tasks. In the context of the school system, IEP goals must be precisely specified and be measurable. Goals are typically written to cover the following areas (in alphabetical order): • • • • • • • • • • • • • asking questions assertiveness attributes block imitation categorization cause and effect communication temptations conversation skills (basic, intermediate, advanced) describing drawing emotions expressive labeling functional communication • general knowledge and reasoning • “I don’t know” • independent work and play • joint attention • matching • motor skills • negation • nonverbal imitation • observational learning • peer interaction • play, play scripts • prepositions • pronouns • quantitative concepts • reading • recall • receptive instructions • receptive label requests • same versus different • self-help skills • sequencing • social awareness • socialization skills • songs • stories • verbal imitation • “What’s missing” • “yes/no” Children using a discrete trial-based curriculum work through the “phases” of the curriculum at their own speed, entirely dependent on their skill acquisition rate. In addition, students may work on different phases simultaneously, especially if they have “splinter skills.34” 3 Splinter skills are those that children have that may be advance of a child’s developmental age. The uneven pattern of development common to children with autism often produces such anomalies: thus a child may be unable to speak a complete sentence but able to add and subtract or read significantly above age level. Autism Services Proposal SJR 567 79 APPENDIX I Estimated Costs for the Proposed Autism Spectrum Disorder Model Centers of Excellence ASD units Statewide Budget Personnel Executive Directors Developmental Pediatricians Child Psychiatrists Psychologists Behavior Analysts Speech & Language Therapists Occupational Therapists Physical Therapists Family Resource Specialists Liaison Staff Composite Budget for Five Centers FTE 1.0 2.0 2.0 2.5 4.0 4.0 4.0 2.0 3.5 50.0 Total Personnel Budget Salary Fringe Total 120,000 30,000 150,000 270,000 67,500 337,500 270,000 67,500 337,500 200,000 50,000 250,000 180,000 45,000 225,000 180,000 45,000 225,000 180,000 45,000 225,000 90,000 22,500 112,500 122,500 30,625 153,125 1,500,000 375,000 1,875,000 3,112,500 778,125 3,890,625 Non-Personnel Travel Supplies Telephone Testing Materials Computer expenses Training expenses 5,000 8,000 20,000 15,000 150,000 40,000 Total Non-Personnel Budget 238,000 Total Centers of Excellence Budget Department of Education Autism Teams Personnel Special Educators Speech & Language Therapists Behavior Interventionists Total Personnel Budget Non-Personnel Travel 4,128,625 Composite Budget for Eight Teams FTE 8.0 8.0 8.0 Salary Fringe 360,000 90,000 360,000 90,000 360,000 90,000 1,080,000 Total 450,000 450,000 450,000 270,000 1,350,000 30,000 Autism Services Proposal SJR 567 80 Supplies Telephone Testing Materials Computer expenses Training expenses 12,000 32,000 24,000 25,000 150,000 Total Non-Personnel Budget 273,000 Total Budget for DOE Autism Teams 1,623,000 TN Center for Autism Personnel Executive Director Research Coordinator Training Coordinator Dissemination Coordinator Tech Support Office Staff Training Staff Research Staff Total Personnel Budget FTE 0.25 0.3 1.0 0.5 1.0 2.0 6.0 2.0 Salary Fringe 32,500 8125 25,000 6,250 50,000 12,500 20,000 5,000 25,000 6,250 40,000 10,000 228,000 57,000 85,000 21,250 Total 40,625 31,250 62,500 25,000 31,250 50,000 285,000 106,250 505,500 631,875 Non-Personnel Travel Supplies Telephone Testing Materials Computer expenses Training expenses 126,375 30,000 12,000 10,000 4,000 12,000 120,000 Total Non-Personnel Budget 188,000 Total Budget for State Center 819,875 GRAND TOTAL 6,571,500