Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research – 2012 UpdateSkip Over Navigation Links
- Question 1: When Should I Be Concerned?
- Question 2: How Can I Understand What Is Happening?
- Question 3: What Caused This to Happen and Can It Be Prevented?
- Question 4: Which Treatments and Interventions Will Help?
- Question 5: Where Can I Turn for Services?
- Question 6: What Does the Future Hold, Particularly for Adults?
- Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
- About the IACC
- IACC Member Roster
- Strategic Plan Update External Planning Group Members
- Office of Autism Research Coordination (OARC) Staff List
Question 5: Where Can I Turn for Services?
What Is New in This Area, and What Have We Learned in the Past Two Years?
New findings and opportunities relating to ASD services over the last two years stem from both research findings that incrementally advanced the understanding of issues affecting the service system and new legislative initiatives that have the potential to dramatically affect the way individuals with ASD access and pay for services.
Access and Payment
The 2011 addendum to Question 5 of the IACC Strategic Plan for ASD Research discusses the Affordable Care Act passed by Congress in 2010 and the Mental Health Parity Act (PDF – 55 KB) implemented in 2010, both of which have the potential to expand service coverage for individuals with ASD. The importance of the Affordable Care Act was recently highlighted in a report estimating that up to 45% of children identified through the U.S. special education system as being on the autism spectrum (206,330 children in 2011) receive Medicaid-reimbursed services (Semansky, Xie & Mandell, 2012). Within the public insurance system, all 50 States offer waivers under Medicaid to provide home and community-based services to Medicaid recipients, and many of those waivers include individuals with ASD. Nine States also have autism-specific Medicaid waivers.
Not mentioned in the addendum in the 2011 IACC Strategic Plan is the proliferation of private insurance mandates passed by State legislatures. Since 2008, 31 States have passed legislation requiring private insurance plans that are subject to State regulations to cover ASD-related services (National Conference of State Legislatures, 2012 ). These mandates range greatly in the types of services covered and the maximum dollar amount allowed, but all have at their core the coverage of behavioral treatments for young children with ASD. All of the mandates address service needs for children, with none mandating service coverage for individuals older than 21 years of age.
Two other major healthcare payers made benefits available for individuals with ASD. The Office of Personnel Management (OPM), which administers health benefits for more than 8 million Federal employees and beneficiaries, recently categorized applied behavior analysis (ABA) as medical therapy. Accordingly, insurance plans in the Federal Employee Health Benefits (FEHB) program were able to propose benefit packages that cover ABA for the 2013 plan year (U.S. OPM, 2012 (PDF – 636 KB)). The OPM decision did not, however, require insurance plans to cover ABA; only 67 of the 230 participating health plans elected to offer this coverage in 2013.
Coverage of ABA therapy for military families through the Department of Defense (DoD) TRICARE program, which provides health care benefits for uniformed service members, retirees, and their families, has also made some recent advances. Prior to 2012, behavioral health treatment was only covered under TRICARE for active duty service members, but not for nonactive members and retirees. In July 2012, however, a Federal court ruling required TRICARE to cover ABA therapy for all military beneficiaries, including nonactive members and retirees, and TRICARE responded with an interim plan for providing coverage.
In addition, in 2012 both the U.S. House of Representatives and the U.S. Senate passed versions of the Federal defense spending bill that contained amendments offering behavioral health treatment coverage to all members of the military, as well as lifting an annual spending cap on ABA benefits. Because the two defense spending bills and amendments were not identical, the Senate and House met in conference committee in December 2012 to create a final compromise bill to send to the President. Cognizant of the ongoing litigation, Congress decided that the final version of the bill would provide a temporary benefit, with further benefits potentially to be provided in future legislation. The bill creates a 1-year pilot program that enables DoD to provide ABA benefits to all TRICARE beneficiaries, not just active duty members, and requires DoD to submit a report to Congress regarding the cost of extending this coverage, as well as any recommendations for additional legislation, within 270 days of enactment. The bill was signed into law on January 2, 2013.
Translating Research Into Practice
The most important goal of services research is translating the results into practice. A recent review of autism screening instruments and practices suggested that current screening instruments do not meet established quality criteria and thus are not suitable for widespread dissemination, and also that the current healthcare and education systems are not prepared for the influx of children that would result from more reliable and valid screening (Al-Qabandi, Gorter & Rosenbaum, 2011). Despite the negative assessment in this review, there is broad support for autism screening in the professional pediatric services community, and some promising findings have suggested more ideal implementation parameters for pediatric practices. However, more research and attention to the development of the service sector are needed before these innovations can be translated to full-scale utilization.
While the 2011 IACC Strategic Plan for ASD Research mentions the lack of successful implementation in community settings of treatments that demonstrated efficacy in research settings, it cites no specific research studies examining these issues. Recently, a number of reports have emerged that conclude that community-based behavioral and pharmaceutical treatment implementation does not resemble evidence-based practice, and outcomes do not mirror those found in research trials (Eldevik et al., 2012; Frazier et al., 2011; Mandell et al., in press; Nahmias, Case & Mandell, 2012). On a more positive note, models for a medical home (a team-based healthcare delivery system that delivers comprehensive and continuous medical care) for children with autism have now been developed. Preliminary evidence indicates that these medical homes result in greater parent satisfaction, greater shared decision making, and fewer unmet service needs (Golnik et al., 2012). On the other hand, these models have not been widely disseminated (Hyman & Johnson, 2012), although some efforts to study the implementation of evidence-based care have been funded and are underway.
Recent research suggests that the lack of quality care is exacerbated among traditionally underserved minority groups. For example, compared with parents of white children with ASD, parents of Latino children with ASD were 1.5 times as likely to report difficulties getting needed referrals, twice as likely not to have a usual source of care, and almost three times more likely to have unmet routine healthcare needs (Parish et al., 2012). In a Canadian study, foreign-born children were diagnosed an average of two years later than Canadian-born children, and children living in rural areas were diagnosed six months later than children living in urban areas (Coo et al., 2012).
"Wandering" or "elopement"—defined as a dependent person exposing him or herself to potential danger by leaving a supervised, safe space or the care of a responsible person—is a critical safety concern for many families with children with ASD. As a result of the IACC's focus on wandering/elopement (PDF – 91 KB), a survey was conducted through the Interactive Autism Network (IAN) to collect data on parents' experiences with the wandering/elopement of their children with ASD. A study assessing the data collected found that forty-nine percent of those surveyed reported that their child had attempted to flee, and a quarter reported that the child had been missing long enough to cause concern (Anderson et al., 2012). Another result of the IACC's emphasis on this issue was that a medical subclassification code to characterize wandering associated with developmental disabilities was proposed to and accepted by the International Classification of Diseases (ICD) Coordination and Maintenance Committee for inclusion in the ICD-9, which is the ninth revision of the ICD coding system. The addition of this ICD-9 code provides the potential to track autistic wandering through healthcare data systems.
Restraint and Seclusion
The use of restraint and seclusion—techniques involving physical or mechanical means to restrict a person's bodily movement for disciplinary or protective purposes—continues to be an issue for parents of children with ASD due to concerns about potential for harm and possible lack of efficacy. In March 2012, the U.S. Department of Education's Office for Civil Rights released data from 2009-2010 on restraint and seclusion in which they reported that 70% of the cases where students were restrained involved students with disabilities (U.S. Department of Education Office of Civil Rights, 2012 (PDF – 805 KB)). This is the first time that restraint and seclusion data have been collected on such a large scale, and these data will serve as the foundation for future research. Additionally, in May 2012 the U.S. Department of Education issued a resource document on the use of restraint and seclusion in schools (U.S. Department of Education, 2012 (PDF – 1.7 MB)). The document provides 15 principles that educators, parents, and other stakeholders can consider when developing or refining policies and procedures to support the use of positive behavioral interventions and supports and to help avoid the use of restraint and seclusion.
Among the most compelling recent research findings is the observation that mortality is elevated among individuals with ASD relative to the general population (Gillberg et al., 2010; Mouridsen et al., 2008). Studies reported standardized mortality ratios (ratio of observed deaths in the study group to expected deaths in the general population) close to three for the ASD population, which means that persons with ASD are about three times more likely to die than an age-matched individual in the general population. To a large extent this increase in mortality in the ASD population appears to be due to co-occurring conditions (Bilder et al., 2012), such as epilepsy (Woolfenden et al., 2012; Pickett et al., 2011), rather than ASD itself. Researchers hypothesize that health care professionals who are treating individuals with ASD may overlook other co-occurring conditions.
New knowledge is emerging about the causes of caregiver burden in families of people with ASD. For example, British researchers found that when young people with ASD had needs that were not met by the education or healthcare service system, it resulted in increased strain and stress for caregivers (Cadman et al., 2012). A 2011 systematic evidence review found that parent training may reduce parental stress and enhance parental confidence, but the quality of the studies reviewed was deemed to be poor (Zwi et al., 2011).
What Gaps Have Emerged in the Past Two Years?
Access to Services and Service Delivery
Most gaps that have emerged in the last two years stem directly from the new findings described above. Of particular concern are the effects on service access and delivery, as well as the quality of the autism insurance mandates. It will be important to determine how State mandates will interact with the Affordable Care Act. Given the recent finding regarding the large proportion of children with ASD who are served through Medicaid, it will be similarly important to estimate how the Medicaid expansion under the Affordable Care Act affects autism-related services.
The recent findings regarding the lack of quality and positive outcomes of community-based care suggested an urgent twofold gap. First, autism researchers should borrow models from dissemination and implementation science to test methods to improve implementation of evidence-based treatments. Implementation science can help identify which components of effective care are the most feasible to implement in community settings. Second, quality measures should be developed to help monitor progress in improving care and outcomes for people with ASD. Research that examines the effects of specific treatment components rather than more complex comprehensive intervention packages, combined with community-based partnership research, will be required to identify which active treatment components can successfully be implemented in community settings.
Another gap relates to the disparities in care that have been extensively documented. This growing body of research now should be paralleled by research on strategies to reduce or eliminate these disparities. Additional research on effective models for supporting families is also sorely needed.
Findings regarding wandering/elopement suggest the urgent need to develop and test specific prevention strategies and interventions to improve safety for individuals with autism. These may include both direct intervention with the individual and indirect intervention through the training of first responders, healthcare professionals, educators, and the broader community.
Although progress has been made in services policy and services research during the past two years, significant gaps remain. Moving forward, greater focus is needed in these areas to improve the lives of those with ASD and their families.
Al-Qabandi M, Gorter JW, Rosenbaum P. Early autism detection: are we ready for routine screening? Pediatrics. 2011 Jul;128(1):e211-7. [PMID: 21669896]
Anderson C, Law JK, Daniels A, Rice C, Mandell DS, Hagopian L, Law PA. Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics. 2012 Nov;130(5):870-7. [PMID: 23045563]
Bilder D, Botts EL, Smith KR, Pimentel R, Farley M, Viskochil J, McMahon WM, Block H, Ritvo E, Ritvo RA, Coon H. Excess mortality and causes of death in autism spectrum disorders: a follow up of the 1980s Utah/UCLA Autism Epidemiologic Study. J Autism Dev Disord. 2012 Sep 25. [Epub ahead of print] [PMID: 23008058]
Cadman T, Eklund H, Howley D, Hayward H, Clarke H, Findon J, Xenitidis K, Murphy D, Asherson P, Glaser K. Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. J Am Acad Child Adolesc Psychiatry. 2012 Sep;51(9):879-88. [PMID: 22917201]
Coo H, Ouellette-Kuntz H, Lam M, Yu CT, Dewey D, Bernier FP, Chudley AE, Hennessey PE, Breitenbach MM, Noonan AL, Lewis ME, Holden JJ. Correlates of age at diagnosis of autism spectrum disorders in six Canadian regions. Chronic Dis Inj Can. 2012 Mar;32(2):90-100. [PMID: 22414306]
Eldevik S, Hastings RP, Jahr E, Hughes JC. Outcomes of behavioral intervention for children with autism in mainstream pre-school settings. J Autism Dev Disord. 2012 Feb;42(2):210-20. [PMID: 21472360]
Frazier TW, Shattuck PT, Narendorf SC, Cooper BP, Wagner M, Spitznagel EL. Prevalence and correlates of psychotropic medication use in adolescents with an autism spectrum disorder with and without caregiver-reported attention-deficit/hyperactivity disorder. J Child Adolesc Psychopharmacol. 2011 Dec;21(6):571-9. [PMID: 22166171]
Gillberg C, Billstedt E, Sundh V, Gillberg IC. Mortality in autism: a prospective longitudinal community-based study. J Autism Dev Disord. 2010 Mar;40(3):352-7. [PMID: 19838782]
Golnik A, Scal P, Wey A, Gaillard P. Autism-specific primary care medical home intervention. J Autism Dev Disord. 2012 Jun;42(6):1087-93. [PMID: 21853373]
Hyman SL, Johnson JK. Autism and pediatric practice: toward a medical home. J Autism Dev Disord. 2012 Jun;42(6):1156-64. [PMID: 22411200]
Mandell DS, Stahmer AC, Shin S, Xie M, Reisinger EM, Marcus SC. (in press). Outcomes and moderators of outcome in a randomized trial of two classroom-based interventions for students with autism. Autism.
Nahmias AS, Kase C, Mandell DS. Comparing cognitive outcomes among children with autism spectrum disorders receiving community-based early intervention in one of three placements. Autism. 2012 Nov 27. [Epub ahead of print] [PMID: 23188885]
National Conference of State Legislatures. Insurance coverage for autism. 2012 Aug.
Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T. Mortality and causes of death in autism spectrum disorders: an update. Autism. 2008 Jul;12(4):403-14. [PMID: 18579647]
Parish S, Magaña S, Rose R, Timberlake M, Swaine JG. Health care of Latino children with autism and other developmental disabilities: quality of provider interaction mediates utilization. Am J Intellect Dev Disabil. 2012 Jul;117(4):304-15. [PMID: 22809076]
Pickett J, Xiu E, Tuchman R, Dawson G, Lajonchere C. Mortality in individuals with autism, with and without epilepsy. J Child Neurol. 2011 Aug;26(8):932-9. [PMID: 21471551]
Semansky RM, Xie M, Mandell DS. Medicaid's increasing role in treating youths with autism spectrum disorders. Psychiatr Serv. 2011 Jun;62(6):588. [PMID: 21632723]
U.S. Department of Education. Restraint and Seclusion: Resource Document. (PDF – 1.7 MB) 2012 May.
U.S. Department of Education, Office for Civil Rights. The transformed civil rights data collection (CRDC). (PDF – 805 KB) 2012 March.
U.S. Office of Personnel Management. Federal Employee Health Benefits Program Carrier Letter. (PDF – 636 KB) April 19, 2012.
Woolfenden S, Sarkozy V, Ridley G, Coory M, Williams K. A systematic review of two outcomes in autism spectrum disorder - epilepsy and mortality. Dev Med Child Neurol. 2012 Apr;54(4):306-12. [PMID: 22348343]
Zwi M, Jones H, Thorgaard C, York A, Dennis JA. Parent training interventions for attention deficit hyperactivity disorder (ADHD) in children aged 5 to 18 years. Cochrane Database Syst Rev. 2011 Dec 7;(12):CD003018. [PMID: 22161373]
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.
Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research —2012 Update. December 2012. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/strategic-plan/2012/index.shtml