IACC Strategic Plan
For Autism Spectrum Disorder
Aspirational Goal: Communities will develop, access, and implement high-quality, evidence-based services and supports that maximize quality of life and health across the lifespan for all people with ASD and their families.
In previous editions of the IACC Strategic Plan, Question 5 (Services) addressed access and coordination of services for individuals with ASD and their families. Research on services and supports focuses on self-directed care, coordination of funding and services among state and local agencies, community-based supports, and the need to better measure the health, safety, and mortality of people with ASD. Previous Question 5 Strategic Plan objectives included support for research to develop and evaluate the training of service providers who work with individuals with ASD, and to improve the efficacy, cost-effectiveness, dissemination, and implementation of evidence-based practices. In 2015, 6% ($21 million) of ASD-related research funding from Federal agencies and private organizations addressed issues related to services.1 A lack of sufficient funding raises considerable barriers for researchers to develop, test, and implement service system delivery models that increase the supply of care and address the gaps between research and practice.2
There have been several notable positive changes over the last few years regarding services research and planning, particularly due to an increased focus on the needs of individuals with autism as they age out of childhood. For example, the U.S. Government Accountability Office (GAO) released two reports, the first entitled Youth with Autism: Roundtable Views of Services Needed during the Transition into Adulthood in 20163 and the second entitled Federal Agencies Should Take Additional Action to Support Transition-Age Youth,4 that described the needs of youth with ASD transitioning to adulthood and ways in which Federal agencies might fill current service gaps. New research on the cost of ASD across the lifespan has contributed to the knowledge base around ASD services. Researchers estimate that the lifetime cost of supporting an individual with ASD without intellectual disability in the United States is approximately $1.4 million.5 Contributors to total costs for children with ASD were direct nonmedical costs, such as special education (including early intervention services), and indirect nonmedical costs, such as parental productivity loss. For adults with ASD, contributors include accommodation (residential care or supportive living accommodation), direct medical costs, and individual productivity loss. Others studies show that caring for a child with ASD can cost over $17,000 per year more than caring for a child without ASD, with 18% of these costs associated with increased use of healthcare services.6
While these studies highlighted some of the areas in which the needs of individuals with ASD are not being met, they have not defined solutions. Adequate, cost-effective services are still lacking, as are strategies to decrease financial stress for families.
In this chapter, we describe gains and opportunities in specific service-related areas. For all the recent successes in ASD services research, gaps in services remain for children and adults with autism and their families.
Progress in the Field
Most school-aged children with autism receive the majority of their ASD-related services through the public education system.7 The number of children receiving these services, as well as the cost of their education, is increasing. A growing body of research suggests a nationwide problem of ineffective educational programming and the need for stronger educational workforce development, support, training, and supervision. With relatively little research on developing specific guidance for addressing challenges within the education system, it is necessary for educators working with students on the autism spectrum to address the complex and growing set of challenges.
While Federal and state legislation has placed a greater focus on accountability and performance standards, there is little agreement or standardization of how performance should be measured. The No Child Left Behind Act and the Individuals with Disabilities Education Improvement Act (IDEA) both state that students with ASD must have access to high-quality, research-based interventions that help keep them in the least restrictive instructional environment that can meet their learning needs. National programs such as the SWIFT (School-Wide Integrated Framework for Transformation) Center have documented change strategies and instructional approaches that can be used to meet these legal requirements. Federally funded programs such as the National Professional Development Center on ASD have demonstrated improved outcomes when students are the recipients of evidence-based practices, and they have begun to develop practices to assist with the scale-up of these interventions. Unfortunately, implementation of evidence-based practices remains the exception rather than the rule; implementation of innovative interventions is challenging due to limited fit with classroom needs and lack of professional support. New research in implementation science highlights the need for a systems approach that includes involving leadership in and across schools to develop a strong culture and climate for quality implementation.
Our definition of autism and our understanding of how autism co-occurs with other mental health challenges has expanded. Eighty percent of students with ASD have co-occurring physical or mental health challenges,8 requiring new education strategies and coordination across multiple service systems. Recent research has focused attention on co-occurring anxiety9,10,11 and depression,12,13 as well as suicide risk.14,15,16,17 Models for recognizing and addressing these challenges in schools have not yet been developed or disseminated.
Many schools have not fulfilled the promise of educating children with autism in the least restrictive and most integrated environment suited to their needs. While several models of inclusion have demonstrated efficacy,18 the type and quality of inclusion programming to which children with ASD have access is highly reflective of local policies, resources, and expertise rather than reflective of evidence-based practices grounded in research. There is also a need for quality interventions to help keep children with ASD in an instructional environment that maximizes their potential; because of the range of learning styles of children with ASD, students often need options such as distance learning and smaller group instruction.
Currently, the public education system is not adequately preparing all children with autism for adulthood. Although there have been improvements in recent years, approximately half of students with ASD leave secondary school without employment or plans for further education.19 While much of school programming is focused on those who will attend college, this is not an option for many students with ASD, who will also leave school without the skills needed to enter the workforce. During the transition to adulthood it is important to teach youth with autism the social and vocational skills necessary to have successful outcomes after leaving the education system.
There has been considerable progress in some areas of ASD services-related research within the healthcare system. One important funding stream for reimbursement of services provided to individuals with ASD is the Medicaid program. Jointly operated between the states and the Federal government, Medicaid provides healthcare coverage for individuals below certain income thresholds and encompasses a wide array of benefits, such as case management; physical, occupational, and speech therapies; and rehabilitative services that are often used by individuals with ASD. The Early and Periodic Screening, Diagnostic and Treatment (EPSDT), the child health portion of Medicaid, mandates the provision of medically necessary services found at section 1905(a) of the Social Security Act to Medicaid beneficiaries under the age of 21. EPSDT ensures that children and adolescents receive appropriate mental health, developmental, and specialty health services. In 2014, the Centers for Medicare and Medicaid Services (CMS) issued guidance affirming the applicability of EPSDT standards to the treatment of ASD. Outside of Medicaid, there are large disparities in insurance coverage and reimbursement rates based on differences in state health coverage mandates. The effects of the discrepancies in billing rates and reimbursement prevent implementation of evidence-based practices and interventions for individuals with ASD and their families.
There is a continued need for ASD insurance reform. Families of children with ASD who have a medical home – a partnership with their primary care doctor to provide personalized treatment plans - report fewer unmet needs and more shared decision making with healthcare providers.20 The Affordable Care Act (ACA) of 2010, Section 2703, created an optional Medicaid State Plan benefit for states to establish Health Homes to coordinate care for people with Medicaid who have chronic conditions. While ASD is not a chronic condition listed in the statute, it is subject to state application, then review and approval. State ASD insurance mandates increase ASD diagnosis and treatment rates by 13%, after controlling for other variables.21 This effect increases the longer the insurance mandates are in place. However, the number of children receiving ASD services is still fewer than would be expected given current prevalence estimates, though this does not control for public versus private service utilization.
Mounting research shows that Medicaid Home and Community Based Services (HCBS) waivers can significantly meet the service needs of people with ASD and decrease their unmet healthcare needs, especially among those who would not otherwise qualify for Medicaid.22 Those with ASD who access services through waivers are also less likely to use inpatient and long-term services care.23 Since 2010, CMS has undertaken several activities that have provided new information about ASD services available in the community. Among these is a report published in 2014, Autism Spectrum Disorders (ASD): State of the States of Services and Supports for People with ASD, which assesses existing state programs and supports for families living with ASD in all 50 states and the District of Columbia.24 This CMS study provides a comprehensive view of services that received support from various Federal sources and were made available through state programs across the country.
Appropriate Services to Address Health and Safety Concerns
Recent studies have shown that people on the autism spectrum are at increased risk of many health challenges and premature mortality.17,25 Research is needed to both understand what causes poor health and safety outcomes and to develop strategies to improve outcomes. Among the most pressing health concerns for children and adults diagnosed with ASD is ensuring adequate support to address co-occurring conditions, which may include mental disorders, sleep problems, gastrointestinal disturbances, or other issues.26 Unfortunately, there is a lack of understanding and awareness among service providers regarding the challenges these conditions pose to individuals with ASD and their families.27 This often leads to a lack of appropriate services and multifaceted interventions. Parents of children with ASD and co-occurring psychiatric conditions are more likely than other parents of children with ASD to report that their child’s needs are not being met.26 A broad assessment of mental health, learning, and cognition problems associated with ASD is crucial to determine appropriate services and treatments for people with ASD throughout the lifespan.28
There is mounting evidence that these co-occurring conditions contribute to premature death among individuals with ASD. A Swedish study showed that the average death for an adult with autism is 54 years, and that loss of life years is mostly attributable to suicide, seizures, and metabolic disease, among other conditions.29 To address these significant health disparities, it is necessary to increase implementation of services and evidence-based approaches in addition to research to improve services for co-occurring conditions.
Wandering behavior presents additional safety risks for some individuals with ASD. Recently, the National Autism Association (NAA) released a report stating a third of reported ASD wandering/elopement cases in the United States were either fatal or required some level of medical attention, while encounters with water, traffic, and other threats accounted for an additional 38% of cases.30 Among emergency care visits, adolescents with ASD accessed emergency department services four times as often as adolescents without ASD.31 There are also disparities in emergency department visits among children with ASD living in rural areas compared to urban places.32 Ensuring broad access to services through more innovative strategies is necessary to close the gaps in health and safety for children and people with ASD. One strategy that has seen success is ECHO Autism, a University of Missouri telehealth program aimed at reducing wait times and improving primary care for children with autism living in remote areas.33 The program has seen success in Missouri and plans to replicate and expand the model to isolated areas throughout the country and world.
The healthcare system needs to emphasize increasing access in underserved populations and increasing cultural competency among service providers. The literature suggests disparities in utilization and access to healthcare and educational services for those with ASD from minority populations and families from lower socioeconomic status (SES).34,35,36,37,38 Ethnic minority children with ASD tend to receive diagnoses almost one year later than White children and often receive fewer specialty services.39 Despite initiatives to increase the quality of healthcare provider interactions with families of children with ASD and developmental disabilities, the health service systems do not meet the needs of minority populations.40 Disparities in access and utilization may be due to the lack of cultural competency of providers, perceived low quality of care, or the lack of family-centered care, among other factors.35 While research has been funded to assess variations in and access to services in relation to health disparities, the research needs to be taken a step further to study how to address what we have learned. We need to better understand what portfolio of services will result in the best outcomes for diverse populations.
Overall, it is important to continue to support research to test quality services and supports as well as evidence-based interventions that can eventually be implemented in a community setting and be accessible through medical coverage. A systematic, evidence-based, collaborative approach can facilitate the scaling up of evidence-based practices in community settings.41 Factors identified to aid in scaling up evidence-based interventions in community settings are organizational support and readiness, program and implementer characteristics, and sustainability planning.42
Ensuring Individualization, Choice, Person-Centered Planning, and Self-Direction
Often, service systems approach the needs of individuals with autism as one-size-fits-all, yet the heterogeneity of autism requires different supports for different people. Individuals with ASD and their families want to be able to make choices about their lives and actively engage in the planning of their services and supports. According to a National Core Indicators survey, the number of adults with autism receiving services through developmental disability (DD) agencies increased from 10% to 15% between 2008/2009 and 2013/2014.43 Further, of the adults who used DD services, those with ASD had significantly less input into all measured life choices (e.g., choosing roommates, choosing day activities) compared with those without autism. Also, fewer adults with autism were legally independent adults without guardianship (37%) than were adults without autism (53%).
In recent years, there have been greater efforts to advocate for use of person-centered planning models, particularly in Federal service systems. Medicaid-funded HCBS waivers are required to be furnished according to a person-centered plan of care, reflecting the services and supports that are important for the individual to meet needs identified through a functional assessment, as well as what is important to the individual in terms of preferences for the delivery of those services and supports. However, there are many individuals with ASD who are not using HCBS waivers but still need the right tools and services to achieve person-centered care throughout their lifespan. While research has identified some of the barriers to person-centered planning, the services community has yet to develop successful strategies to ensure individualization and choice for individuals with ASD to lead independent and meaningful lives.
Caregivers may experience significant levels of stress as they support an individual’s needs and manage medical and therapy appointments, while also engaging in work and other responsibilities.44,45 The high cost of services also creates increased financial strain for families, who often are the main caregivers across the lifespan. Families often need respite services to be able to take care of themselves, have breaks from caregiving, and increase their own social and emotional well-being so they are in turn able to support and care for their family member with ASD.46 Also, respite care has been shown to reduce hospitalizations among children with ASD.47 Mindfulness-Based Stress Reduction interventions have been shown to be helpful for families of individuals with disabilities, but those studies have primarily focused on families of children.48
Parent education about autism and parent training focused on teaching behavior management strategies are both effective in reducing disruptive behavior – with parent training having a slight advantage in one study.49 More research is needed regarding the effectiveness of these services for different parent populations and across different types of parent educators.
Further, studies are needed to examine the transition of care from parents to other family members, once parents are no longer able to provide care. There is a rich history of caregiver transition research among adults with intellectual disability, but little is known about how this process occurs in families caring for a relative with ASD.
Outcomes, Quality of Services, and Service Needs
One size does not fit all when addressing unmet service needs. Even though parents from both low- and high-income homes have awareness of their child’s service needs, parents from lower-income homes report more barriers to accessing services. Specifically, they report needing more information about services and more in-home services, while higher-income parents report needing higher-quality services.50
Despite public investment in special education, studies show high rates of disconnection from jobs and continued education after high school. Of young adults who were not working or attending school, 28% also received no ASD-related services.51 Overall, one-fourth (26%) of young adults with autism received no services between high school and their early twenties.51
A qualitative study of service receipt and unmet service needs during the last year of high school found that youth with ASD in this cohort were receiving fewer services than youth with ASD captured in earlier data from the Department of Education’s National Longitudinal Transition Study-2 (NTLTS2).52 Two-thirds of the sample from the 2015 study had unmet service needs during the last year of high school, with 30% having three or more unmet needs. Specific needs included career counseling/job skills training and life skills training. Youth with autism without ID were far less likely to receive these services. Barriers included cost, geographic access to services, and lack of providers who accepted their insurance.
Results from the Pennsylvania Autism Needs Assessment survey, which represented people with autism ages 2-59 years indicated that, compared to other age groups, adults received fewer services for their specific unmet needs in social skills training (43%), speech-language therapy (22%), individual supports (21%), and occupational therapy (21%).53 Focus groups of Pennsylvania adults with ASD who use Medicaid-funded services and those who care for them identified a specific set of needs: training (co-occurring diagnosis, sexuality, long-term planning), community engagement (individualized community activities geared to interests of individuals), socialization, and employment.54
The complex needs of the service system make it difficult to sustain implementation science. For example, organizations trying to implement evidence-based practices might not be able to maintain the cost to fund these services and supports long-term. Current and future research initiatives need to consider improving the service infrastructure.
Housing, Supports, And Other Services Across a Continuum of Severity And Need
Residential services, postsecondary education, employment supports, behavioral and communication supports, lifetime learning supports, and other services are discussed in more detail in Questions 4 and 6 of the Strategic Plan, but they are important to mention here in that these services must also be provided based on the continuum of severity and need, and they must be integrated with other services as part of a coordinated system of services and care for individuals with ASD.
Underlying many of the challenges described in the above sections is the lack of a well-trained, supervised, and motivated workforce. Several studies have documented practitioners’ insufficient use of evidence-based practices in community settings, as well as the difficulties associated in implementing these practices because practitioners lack appropriate pre-service training and preparation, oversight in the field, or a sense that the use of these practices is expected, supported, and rewarded.55,56 The field of implementation science has begun to address how to impact practitioner behavior through organizational change and direct-to-practitioner support. However, these strategies do not address more fundamental issues related to attracting highly qualified individuals to relevant professions, creating pre-service training programs that prepare individuals to deliver evidence-based care, and keeping individuals in the field once they complete their education and/or training.
Coordination of Services
There is also a need for systematic analyses of the complexities of accessing the service systems. While there is a lack of research in this area, families face multifaceted challenges to access services that often delay the receipt of early intervention services for a child. Expansion of Section 2703 of the ACA to include ASD and other developmental disabilities may increase the number of families who have a medical provider and a medical home and improve access to and coordination of care. Coordination of service sectors is urgently needed. Also, families must deal with different sources of funding for services, frequently with different rules for who, what, and how many services can be provided, with no clear sources of information about what these sources are and how they interact. The different service sectors are not coordinated and often do not communicate with each other, particularly across health and social service agencies. In most instances, there is not funding to support coordination or an assigned liaison. There are other systematic barriers for families such as differences in the type and amount of services supported by insurance plans and the inequities and disparities in type and amount of services available among geographic location.
Individuals with autism often require services provided through different agencies and paid for through different systems. Care delivered across these systems often is inefficiently and ineffectively coordinated. Some of the challenges are endemic to systems that are providing care concurrently (e.g., the education and healthcare systems); other challenges are endemic to hand-offs between systems as individuals age out of one set of programs into another.
Some service models have been shown to promote better integration of care. For example, health home models and medical home models provide conceptual frameworks to coordinate and integrate services, as well as build systems of care for persons with ASD and their families.57 Use of these models is not widespread, however, nor do these models address a host of other coordination challenges. For example, analysis of the National Longitudinal Transition Study-2 found that only 58% of youth with ASD reported having received a transition plan by the Federally required age.51 The transition plan is a critical document that offers a template for coordination between the school system and systems that serve adults. In a 2012 report, GAO found that youth and their families faced challenges in identifying, navigating, and establishing eligibility for services for adults with disabilities, including autism58 (GAO-12-594). The same report found that adult service systems did not routinely provide a coordinated plan of services or objectives for youth making transition to adulthood. There is a particular gap in implementing and evaluating the coordination between policy and practice for the services needs of individuals with ASD.
There are many opportunities for increased investment in ASD services research to fill important gaps in knowledge about what services are needed, how to best deliver them, which services work for which communities, and strategies to increase implementation of best practices across settings. The Committee continues to highlight the need for researchers to focus on developing practical, affordable, and culturally competent services and support approaches that can be used in a variety of settings, and for these approaches to be able to be adapted to the required scale to meet community needs. There also needs to be an understanding of what portfolio of services will result in the best outcomes for diverse populations. More innovative research approaches and the resulting data will be needed in the future to support progress toward the IACC Question 5 Aspirational Goal of creating an environment where "communities will develop, access, and implement high-quality, evidence-based services and supports that maximize quality of life and health across the lifespan for all people with ASD and their families."
OBJECTIVE 1: Scale up and implement evidence-based interventions in community settings.
- Identify best practices, including systematic evidence-based collaborative approaches, to scale up existing services and increase access to evidence-based interventions in communities.
- Test and implement cost-effective healthcare services that increase the supply of care.
- Develop approaches that scale up the use of evidence-based practices in the educational setting and address the gaps between research and practice.
- Funding for provider training is a part of Question 7 Objective 2, but is cross-referenced here because successfully growing the service workforce is necessary to achieve this objective to successfully scale up and deliver evidence-based ASD interventions.
OBJECTIVE 2: Reduce disparities in access and outcomes for underserved populations.
- Support research to understand and develop strategies to address health disparities, health inequity, and disparities in services access and utilization for underserved populations. Underserved communities include families with low socioeconomic resources, youth and adults with severe intellectual impairment, those who are racial/ethnic minorities, and women.
- Develop culturally competent service provision strategies, improve the quality of care and perception of quality of care to encourage utilization, and increase family-centered care as well as other best practices to reduce disparities.
OBJECTIVE 3: Improve service models to ensure consistency of care across many domains with the goal of maximizing outcomes and improving the value that individuals get from services.
- Develop better metrics and measurement tools for health outcomes of people with ASD across the lifespan.
- Develop, test, and implement metrics and measurements for ASD services, as well as Federal, state, and local programs.
- Quantify outcomes in order to inform effective service models.
- Continue research into determinants of service quality, including accessibility, continuity, and flexibility of services.
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