IACC Strategic Plan
For Autism Spectrum Disorder Research
- What types of services and supports should I seek and where can I find them?
- What is my state or local government doing to provide services for ASD?
- What is the cost of services and how will it be paid?
What do we know?
To fulfill the mission to "profoundly improve the health and well being of every person on the autism spectrum across the lifespan," scientific discoveries must be implemented in communities and supported by public policy. The gap between knowledge and action can only be overcome by an aggressive focus on engaging families, people with ASD, and the services community in the research process, disseminating research findings into the community, eliminating barriers to services and helping people with ASD and their families identify which services are needed.
The communities in which children are diagnosed vary tremendously in their ability to meet the needs of people with ASD (Shattuck & Grosse, 2007). Local school districts vary in their ability to identify and provide appropriate educational and related programs for children with ASD (Mandell & Palmer, 2005; Palmer et al., 2005). States vary in the policies they have developed to organize, finance and deliver care. The professional infrastructure or capacity is often inadequate to provide timely diagnosis, appropriate care, services and supports, and assure health and safety.
While remarkable improvements have been made during the last three decades in understanding the best ways to identify, assess, educate and support people with autism and their families, these improvements rarely enter community practice. In fact, some have suggested that the lag between research and practice is close to 20 years. When proven-efficacious services are implemented in community settings, they often do not result in the same positive outcomes (i.e., they are efficacious in research settings, but not effective in community practice). The reasons for this lag and ways to improve services only recently have become an area of research in autism.
Another important issue for service delivery is that community needs far outpace the state of research. Most autism services research has focused on behavioral interventions for young children. Behavioral interventions for youth and adults, as well as community supports that address quality of life (as opposed to core symptoms) for people with autism and their families have almost no traditional evidence base to support them. Yet these types of services are some of the most requested and most needed. Providers and policy makers must therefore make decisions in the absence of evidence. Local resources, advocacy, and creativity about existing funding streams all may affect what services get funded, by whom, and for whom.
These differences in policies, resources and organization result in marked differences in the prevalence of ASD across geographic areas, the types of services and support that are received, availability of appropriate lifespan transition opportunities, and the associated costs (Fujiura, Roccoforte, & Braddock, 1994; Ganz, 2007; Järbrink, Fombonne, & Knapp, 2003; Mandell et al., 2008; Ruble et al, 2005; Stahmer & Mandell, 2007). In general, children with ASD have a much more difficult time accessing appropriate services than children with other special healthcare needs (Krauss et al., 2003). Data are still lacking on how these differences in policy and infrastructure relate to the differences in services used, and in turn how these differences affect outcomes for children and families, and adults with ASD.
What do we need?
People with ASD and their families need assistance navigating complex service systems to find the most appropriate services and supports. Providers and people with ASD and their families need help choosing and implementing evidence-based services that are effective and sustainable. Policy makers and payers for services, including private insurers and school districts, need assistance creating organizational structures and financial incentives so that high-quality interventions are institutionalized. Equally important, services researchers and community organizations must collaborate to quickly and efficiently develop much-needed services and supports for underserved groups among people with ASD, and to test widely-used, safe, and promising services that may not have much evidence to support them.
Strategies to educate people with ASD and their families about the best ways to obtain appropriate services and supports should be developed and tested. Methods for simplifying the process by which people access services also are needed, with a focus on improving collaboration across the many agencies that provide services to people with ASD. This is especially important for traditionally underserved groups whose members often are diagnosed late (or not at all), and who are even more likely than other people with ASD to receive inappropriate or inadequate services.
An initial part of this process is the assessment of needs and costs. Services for developmental disorders are financed largely by federal, state and local agencies in both the health care and education sectors. Because there are significant regional differences in ASD resources, describing this varied landscape across states and localities in the U.S. will provide important baseline data for those with ASD and policymakers so they can appropriately seek and plan for services respectively. Research can also define the cost-effectiveness of evidence-based practices and thereby provide the data needed by various payers and policymakers.
Observational studies of current practice can play an important role in understanding how best to address questions surrounding services and supports. They can identify malleable barriers and appropriate points of intervention, and provide a baseline against which to measure future progress. Because service systems vary greatly from place to place, these types of studies also can take advantage of the natural experiments that occur as systems struggle to respond to the needs of people with ASD.
Experimental studies are more difficult to design and conduct in this area of science than they are for traditional intervention trials; yet are key to understanding the best ways to improve community services. Designs such as those used in comparative effectiveness research, where both groups receive intervention (rather than having a "treatment as usual" control), will be critically important to satisfy ethical and practical concerns. Because the unit of analysis for many of these studies is the provider or system, rather than the person with ASD, large-scale network studies and quasi-experimental designs will also yield information.
Families, people with ASD, and communities can be empowered to become partners in research that can in turn inform policy. Research must include services that are built upon principles of self-direction and self-determination, and emphasize quality of life across the ASD spectrum. All people with ASD, their families, and support systems should have the services and supports they need and desire throughout the lifespan to lead productive lives in the community, and to reach their fullest potential.
Aspirational Goal: Communities will access and Implement Necessary High Quality, Evidence-Based Services and Supports that Maximize Quality of Life And Health Across the Lifespan for All People with ASD.
- Development and effective dissemination of evidence-based community practices for people with ASD across the spectrum and lifespan.
- Comparative effectiveness studies of services and supports for people with ASD across the spectrum and lifespan.
- Studies that characterize current ASD diagnostic and service utilization patterns in community settings, examine the relationship between the likelihood of a diagnosis and services availability for ASD, and evaluate services and intervention outcomes across the spectrum and lifespan.
- Development of a coordinated, integrated, and comprehensive community-based service delivery system for people with ASD.
- Support two studies that assess how variations and access to services affect family functioning in diverse populations, including underserved populations, by 2012. IACC Recommended Budget: $1,000,000 over 3 years.
- New objective
Conduct one study to examine how self-directed community-based services and supports impact children, youth, and adults with ASD across the spectrum by 2014. IACC Recommended Budget: $6,000,000 over 3 years.
- New objective
Implement and evaluate two models of policy and practice-level coordination among state and local agencies to provide integrated and comprehensive community-based supports and services that enhance access to services and supports, self-determination, economic self-sufficiency, and quality of life for people with ASD across the spectrum and their families, with at least one project aimed at the needs of transitioning youth by 2015. IACC Recommended Budget: $10,000,000 over 5 years.
- Test four methods to improve dissemination, implementation, and sustainability of evidence-based interventions, services, and supports in diverse community settings by 2013. IACC Recommended Budget: $7,000,000 over 5 years.
- Test the efficacy and cost-effectiveness of at least four evidence-based services and supports for people with ASD across the spectrum and of all ages living in community settings by 2015. IACC Recommended Budget: $16,700,000 over 5 years.
- New objective
Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers to benefit the spectrum of people with ASD and promote interdisciplinary practice by 2015. IACC Recommended Budget: $8,000,000 over 5 years.
Note: Objectives in boxes labeled "New objective" are either entirely new additions to the 2010 Strategic Plan or significantly modified objectives from the 2009 Strategic Plan. Objectives from the 2009 Strategic Plan that did not change or that have been slightly modified for clarification purposes are unmarked.