• 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 in the past 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 services with proven efficacy 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 health care 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, adults, and families 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 United States will provide important baseline data for those with ASD so they can appropriately seek services, and policymakers so they can appropriately plan for services. 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, and 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 others who support them 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.

2011 Addendum To Question 5: Where Can I Turn for Services?

What Is New in This Research Area, and What Have We Learned This Past Year?

Recent legislative initiatives, including the Affordable Care Act passed by Congress in 2010, support research and State and Federal programs that will positively impact health and quality of life for people with ASD. These include expanded opportunities in 2014 for individuals at 133% of the Federal poverty line to access health care; increased attention to health and medical home care coordination; expanded health information technology; a national quality improvement strategy that will develop and refine quality measures; the expansion of Medicaid options to provide home and community-based services (HCBS) through several new venues, including "targeting" to people who do not meet traditional institutional level of care program requirements, and Community First Choice services; the extension of the Centers for Medicare & Medicaid Services' (CMS) Money Follows the Person Rebalancing Demonstration Program; the CLASS Act; increased opportunities surrounding the removal of barriers to providing HCBS; incentives to offer HCBS as an alternative to nursing homes; a new focus on improved coordination for individuals eligible for both the Medicare and Medicaid programs through the Federal Coordinated Health Care Office; and establishment of the Center for Medicare & Medicaid Innovation (Innovation Center website).

The Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) (PDF – 55 KB), went into effect in 2010. Details of how parity will be implemented are still being resolved, but the concept of comparable coverage for mental health and substance use disorder benefits and physical health services has broad implications for children and adults with ASD. An interim final rule was published in February 2010 by the Departments of Labor, the Treasury, and Health and Human Services (Federal Register, 2010 (PDF – 270 KB)).

Several recent articles focused on oral health issues, highlighting a need to further investigate the impact of dental treatment on people with ASD throughout the life course. Oral disease is a major health challenge for people with developmental disabilities, including ASD (Altun et al., 2010a,b; Loo, Graham & Hughes, 2009). In 2010 and 2011, many State Medicaid programs that support adults with ASD have or will substantially reduce optional adult dental care services (Smith, Gifford & Ellis, 2010 (PDF – 3.88 MB)).

A 2010 Swedish study examining risk factors and causes of death in a cohort of 120 people with ASD found that co-occurring disorders (including sudden unexplained death in epilepsy), accidents, and deaths occurred at a rate 5.6 times higher than that of the general population (Gillberg et al., 2010). In addition, information was presented in 2010 to the IACC regarding wandering incidents, some that resulted in death (Presentation to the IACC on Wandering and ASD, 2010 (PDF – 1.27 MB)). In response, the IACC formed a Safety Subcommittee to gather information and take appropriate actions to address wandering and other important safety issues that impact the autism community.

What Gap Areas Have Emerged Since Last Year?

Access to quality and affordable oral health care services continues to be a challenge for children, youth, and adults with ASD (Government Accountability Office, 2010 (PDF – 4.55 MB)). In addition, access to psychiatric expertise specific to intellectual and developmental disabilities (ID/DD) and ASD in State mental health systems is poor, overall capacity is lacking, and issues of seclusion and restraint persist (Barry, Huskamp & Goldman, 2010; Munir, 2009; Prouty et al., 2008). There is greater need during a time when disabled family members are remaining at home longer to coordinate community resources, including mental health services.

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.

Research Opportunities

• 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.

Short-Term Objectives

Note: Dates that appear next to the objectives indicate the year that the objective was added to the Strategic Plan. If the objective was revised in subsequent editions of the Plan, the revision date is also noted.

Dates 2009 Revised in 2010	A.	Support two studies that assess how variations in and access to services affect family functioning in diverse populations, including underserved populations, by 2012. IACC Recommended Budget: $1,000,000 over 3 years.
Dates 2010	B.	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.
Dates 2010 Revised in 2011	C.	Implement and evaluate five 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, (which may include access to augmentative and alternative communication [AAC] technology), with at least one project aimed at the needs of transitioning youth and at least one study to evaluate a model of policy and practice-level coordination among State and local mental health agencies serving people with ASD, by 2015. IACC Recommended Budget: $25,000,000 over 5 years.
Dates 2011	D.	Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. IACC Recommended Budget: $4,500,000 over 3 years.

Long-Term Objectives

Note: Dates that appear next to the objectives indicate the year that the objective was added to the Strategic Plan. If the objective was revised in subsequent editions of the Plan, the revision date is also noted.

Dates 2009 Revised in 2010	A.	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.
Dates 2009 Revised in 2010	B.	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.
Dates 2010	C.	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 to promote interdisciplinary practice by 2015. IACC Recommended Budget: $8,000,000 over 5 years.
Dates 2011	D.	Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015. IACC Recommended Budget: $2,000,000 over 2 years.
Dates 2011	E.	Support three studies of dental health issues for people with ASD by 2015. This should include: One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment. IACC Recommended Budget: $900,000 over 3 years. One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD. IACC Recommended Budget: $900,000 over 3 years. One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice. IACC Recommended Budget: $900,000 over 3 years.