Assistant Professor of Medicine at Rush University Medical College, where he also ... He received his bachelor's degree
Autism Spectrum Disorders: A Round Table Discussion with MCG Experts and Stakeholders Cover photo courtesy CHOATphotographer/Shutterstock
April is Autism Awareness Month, and many events and activities across the nation are being launched to promote autism awareness and acceptance. In honor of this occasion, MCG has assembled a group of internal experts and stakeholders to discuss the challenges that families may face with respect to the diagnosis, treatment, and ongoing care of people with autism spectrum disorders (ASD). We hope that this conversation sheds some light on the progress that has been made, strategies that have been successful for some families, and the active work that MCG continues to do in order to improve the lives of those with autism spectrum disorders. Our participants include: 1. 2. 3. 4. 5. 6.
Laurent Tao, MD, MPH, FACP (moderator) – Editor-in-Chief Angela Askren, RN, MSN, CMC – Managing Editor, Post-Acute Care Keith Berard – Senior Software Architect Stacey Popko, MD, MBA, FACP, FAAP – Managing Editor, Ambulatory Care Chris Van Waters – Chief Information Officer Monique Yohanan, MD, MPH – Senior Physician Editor and Subject Matter Expert in Behavioral Health
Laurent Tao: Thank you all for joining our Round Table Discussion on the topic of autism spectrum disorders. This is an issue that all 6 of us are passionate about and that MCG is very mindful of. Recent statistics show that more than 3.5 million Americans live with an autism spectrum disorder, and prevalence in the United States is estimated at 1 in 68 live births. There continues to be growing awareness of the scope and impact of these disorders. In fact, I think it’s fairly uncommon for someone to not know a person or a family that is affected by them. Chris and Keith – each of you has an autistic son. Could you tell us a little bit about how they were diagnosed and what that process was like for you? Chris Van Waters: Like many parents of autistic kids, we began to have some mild concerns about Wyatt starting at around 9 months of age. We were still living in the DC area at the time, and our pediatrician downplayed our concerns about Wyatt’s speech and expressed an opinion that Wyatt was probably just developing a little slowly. We eventually started him in speech therapy, and it was actually his speech therapist that agreed with our concerns and supported our idea to have Wyatt see a neurologist. Wyatt was just over 3 years old when we received his official autism spectrum disorder diagnosis from a neurologist in Seattle. Keith Berard: We had a similar experience with Jack. Our son first presented with a speech delay, but it later became apparent that he had some sensory issues as well. Our physician had little initial input, except to suggest hearing tests. Eventually, our pediatrician said “it’s time to call EI (Early Intervention).” Evaluation ensued for PT (physical therapy), OT (occupational therapy), SLP (speech-language pathology), and group therapy, and we needed them all. It wasn’t enough. We pursued ABA (applied behavioral analysis) for aid prior to age 3. Multiple phone calls led us to find HMEA (Horace Mann Educational Associates, a local resource for children and adults with developmental disabilities), but we needed a diagnosis letter ASAP. After making more phone calls, we finally found a neurologist at the Integrated Center for Child Development who could see him soon. Several meetings later, Jack was diagnosed with ASD. Page 1
Chris Van Waters: Overall, it took longer and was more challenging to get the diagnosis than it was to define the treatment plan, at least the high-level treatment plan. We feel like we unnecessarily delayed therapy for a year by not more aggressively pursuing an opinion beyond our pediatrician’s. Over the years, it has been a bit confusing and challenging to figure out the right mix of hours between OT, ST (speech therapy), and ABA. Our neurologist eventually recommended a schedule of 20 to 24 hours a week of a mix of OT, ST, and ABA. Laurent Tao: It’s surprising to me that both of you had problems establishing a diagnosis for your children, and that getting access to the right providers and services was delayed for quite some time. My interest in the subject dates all the way back to my second year as a medical student when I assisted with a research study to analyze single and coordinated socially directed behaviors in autistic children as compared to non-autistic children; medical students were being taught a lot more about autism in our curriculums. More recently, celebrities have helped to broaden awareness of autism: Golfers Ernie Els and Jordan Speith have autistic family members, and actors Dan Aykroyd and Daryl Hannah have spoken about their personal diagnoses. Finally, there was a lot of press when DSM-5 was released in 2013, as it launched the new terminology of “autism spectrum disorders.” Keith Berard: There’s still a long way to go. To this day, we still have doctors/specialists who ask “is he autistic-autistic, or just on the spectrum?” I presume they are referring to behavioral issues. Laurent Tao: For our editors, what kinds of questions do you receive from physicians and other healthcare providers regarding autism spectrum disorders? Is there still a lack of knowledge out there in the community? Monique Yohanan: We get a few questions each year about content related to autism spectrum disorders, especially with respect to ABA, which we introduced into our Behavioral Health Care content in the 19th edition. Clients are looking for guidance as to which patients are appropriate for ABA services, as well as alternatives to ABA. Stacey Popko: For Ambulatory Care, our clients are interested in rehabilitation services for children with autism, and they are looking for guidance about the typical number of visits for these children. Angela Askren: The Post-Acute Care team has had many customer requests for guidance on care for individuals with autism spectrum disorders, with increasing interest in the past 3 years. This might be a result of CMS (Centers for Medicare & Medicaid Services) releasing a Final Rule on Medicaid Home and Community-Based Services (HCBS) in January of 2014. This rule provided opportunities for Medicaid beneficiaries to receive services in their own home or community instead of in institutions, and really opened up options for people with intellectual or developmental disabilities. It is estimated that 53% of all Medicaid long-term care spending is for HCBS. Monique Yohanan: To Keith’s point, there is still a lot of variability in the community surrounding appropriate terminology and treatment. One of the big challenges with autism is the evidence – broadly speaking, many physician providers favor randomized controlled trials (RCTs) and having standardized manuals for treatment, whereas psychologists often are more supportive of case series and treatment that is ad hoc. Many psychologists and advocates have expressed concerns about RCTs being considered the gold standard of evidence for long-term conditions such as autism; they don’t think RCTs are as good as individual case series in bringing new treatments to practice, and they prefer an individualized model of care rather than standardized care that uses manuals to guide therapy. This group also tends to think that the clinical outcomes and behavioral findings from RCTs, while having some importance, are not necessarily as meaningful to people affected by autism as nuanced “soft” outcomes – for example, is a child independent, happy in social relationships, engaged in schoolwork? Page 2
Monique Yohanan (continued): Those kinds of questions often aren’t the focus of RCTs, and even when they are, health-related quality-of-life instruments can miss subtle improvements that children and parents might value. To be fair, RCTs aren’t necessarily great for capturing those sorts of outcomes, and so there’s a bit of a conundrum: The things that are measurable (for example, behavioral outbursts) aren’t always the most important things to parents and kids, while the things that are less measurable (such as general feelings of satisfaction) are much less amenable to study in RCTs but are among the things parents and kids value most. Chris Van Waters: In my opinion, one of the most difficult things I face as a parent is sifting through all of the various treatments, “cures,” and anecdotes about miraculous results from x or y or z, etc. If we could help parents really understand the evidence that shows that starting intensive therapy interventions as early as possible produces results, that would be really helpful. But it sounds like there isn’t a real consensus among medical professionals either . . . Monique Yohanan: It’s a real challenge to synthesize all of the information that’s out there, but I’m proud of the fact that MCG uses an evidence-based approach to arrive at our treatment recommendations. We use Evidence Grades to rate the quality of the literature that we cite in our guidelines and are very transparent as to the sources we use, whether they are guidelines from other organizations, randomized controlled trials, or case series. Stacey Popko: That’s an important point. In our rehabilitation guidelines for speech therapy, we list clinical indications that describe when certain services may be appropriate, and each indication is supported by an annotation that summarizes the evidence base that supports that recommendation. That way, a customer can look at the primary literature and have a conversation with others if there is confusion or disagreement. In addition, in our rehabilitation guidelines we provide benchmarking data that shows the distribution of the number of rehab visits per treatment episode for specific diagnoses, including autistic disorder and Asperger’s syndrome. This helps our customers get a better sense of what clinical practice is like in the real world. Laurent Tao: Speaking of the real world, what content have you recently added to try and keep up with the most recent developments in autism diagnosis and care? Angela Askren: Customers have asked for content to support the management of patients in a disease management program, specifically to help them provide assistance, education, and ongoing support for patients with autism spectrum disorders (and their caregivers). In the 21st edition of our Chronic Care guidelines, we introduced a Self-Management guideline titled “Autism Spectrum Disorders - Knowledge of Condition and Treatment Plan.” This guideline covers the foundational elements needed to help patients and caregivers be educated, supported, and empowered. The guideline provides evidence-based information about symptoms, related diagnoses, treatment, goals, a self-management plan, medications, and a caregiver action plan for challenging behavioral episodes. Stacey Popko: In Ambulatory Care we have added Developmental Language Disorders Rehabilitation and Developmental Speech Disorders Rehabilitation guidelines. In addition, there has been much interest in genetic medicine. The field of genetic medicine is rapidly developing, and our understanding of the genetic basis of ASD is growing. MCG has added several guidelines that address testing for the genetic basis of autism, including “Chromosomal Microarray Analysis-Autism Spectrum Disorders,” “Chromosomal Microarray Analysis-Intellectual Disability,” and “Whole Genome/Exome Sequencing-Autism Spectrum Disorders.” As new evidence and testing becomes available, MCG can help clinicians and payers understand and interpret the evidence base that supports or refutes these tests. Page 3
Keith Berard: That’s interesting. Our son’s physician recommended some genetic testing for Jack. Parents often need help in navigating the healthcare system. I was fortunate to learn a lot about healthcare through my experiences at MCG, but despite my access to the guidelines, the literature for ASD was sadly lacking at the time, so Jack was denied for genetic testing early on. We fully expected this to be the case, as the results were mainly intended to help rule out other contributing factors, but there’s definitely a need for better and more standardized resources for physicians and patients, too. Monique Yohanan: In the 20th edition, we added several guidelines on community-based behavioral healthcare which addressed alternatives to care, including “Therapeutic Behavioral On-Site Services,” “Social Skills Training,” and “Mental Health Support Services.” One of the challenges with ABA is that while there is good evidence to support the role of comprehensive ABA therapy in some young children with autism, not every situation is appropriate for ABA. Clients have alerted us to the fact that there are many states which mandate ABA services for all age groups. This led to us to go back to the literature and expand our content. In the 21st edition, we provide guidance as to which kinds of ABA services are appropriate for people with autism depending on their age, and also discuss evidence regarding the duration and intensity of services. Chris Van Waters and I have become friends during my time at MCG, and I have followed Wyatt’s progress. Wyatt is a poster child for the benefits of ABA therapy, and when I write the Behavioral Health Care guidelines I often think about him and the progress he’s made in therapy. Laurent Tao: Are there questions that still remain with respect to how best to care for individuals with autism spectrum disorders? Can MCG help to answer these questions? Keith Berard: From a parent’s perspective, I would stress the importance of early recognition and intervention. There are many services freely available for children under 3, but without being proactive, or in our case, having another sibling as a reference point, it’s difficult to notice a lack of progress. I think the most useful would be help in navigating terminology or exposure to “things to try.” For us, one found gem was the use of a compression vest. For some time, Jack would have trouble focusing on tasks. It turns out that simply wearing this vest gave him the sensory feedback he needed, which he couldn’t communicate to us. He no longer uses the vest, but he still benefits from being able to push his feet up against something when sitting, and finds comfort with a heavy/weighted blanket for sleep. Angela Askren: HCBS for autism spectrum disorders remains an open question. These services may include care that is traditionally provided at home, such as physical therapy or speech-language pathology, but also includes other types of care that are usually done in an outpatient clinic or office, such as cognitive behavioral health services. Customers have asked for evidence-based guidelines to support the authorization of HCBS, monitor progress, and establish discharge criteria for care provided in different settings. Customers are challenged to potentially offer more than the usual therapeutic care at home, as well as to offer therapeutic care in places where the patient needs support in order to function day-to-day – locations such as school, day care, and work. Monique Yohanan: I’ve heard that, too – people want to know what kind of care should be given, where, and how much. But we also have to remember that there are factors that influence the effectiveness of various therapies. One of the best predictors of success with ABA therapy is the level of parental engagement. While this is a factor we address in the guidelines, our ability to influence that kind of engagement, and the societal factors that go into supporting parents in this role, are beyond the scope of our content. The role of parents in therapy also speaks to one of the challenges in conducting research in this field. It is impossible to blind parents to the treatment arm to which their child has been assigned, and parent-reported assessments of progress have the potential to impact measured treatment effects.
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Laurent Tao: Yes, there’s only so much that MCG can do in terms of providing evidence-based guidelines. But we do offer other tools and resources for patients and their families, namely the Chronic Care guidelines that Angela mentioned previously. These guidelines help a case manager to identify problems, barriers, goals, and interventions for individuals with a variety of specific diagnoses and include assessments that cover psychosocial issues, functional status, and general wellness, among other areas. Significant burdens on families with children with autism spectrum disorders often include the coordination of care and authorization of services from their insurance companies. Chris and Keith, has that been an issue for either of you? Chris Van Waters: So far we have been lucky in that all of Wyatt’s services have come from one provider. He receives OT, ST, and ABA at the same clinic. The biggest challenge is related to supply and demand. It can take many months to get off of waiting lists and start receiving services. The thing that helps us the most in terms of navigating the system is the fact that my wife is able to care for Wyatt all day and, therefore, we have a very flexible schedule and are able to take slots that don’t work for all families. Keith Berard: Finding a reputable ABA company took some time for us, but we were successful and made good progress until Jack “aged out” at 3 years. In Massachusetts, therapy prior to age 3 is fully covered, including what may not be covered by our payer. Chris Van Waters: We have not had significant difficulty working with our payer, but there has been the occasional delay in authorization that did require me to pay for full services out of pocket for a couple of weeks and then ultimately file for reimbursement. A side note on that topic: Luckily we have the financial resources to handle paying for 20 hours of therapy per week for 2 weeks. But, a situation like that could be really bad for some families. If they had to stop going to the appointments due to an inability to pay out of pocket, they could risk losing their slot in the clinic’s schedule and end up back on waiting lists. I did once refer to our guidelines when speaking to a case manager to get authorization for more speech therapy appointments. I can’t say that the result would have been any different if I had not referenced the guidelines, but I am pretty sure that it shortened the conversation. Keith Berard: It’s been an adventure so far. At the peak of our time with ABA, we were working with an OT, an SLP, 3 BTs (behavior technicians), a BCBA (board certified behavior analyst), and a CC (care coordinator). The 25 hours per week of ABA were complex to schedule, and we had to find creative ways for Jack’s older sibling to not feel “left out.” We prepared for almost a year for Jack to enter public school because if the school didn’t meet his needs, we would need to pay out-of-pocket for ABA. On the day we met with the school for the Individualized Education Program meeting, the school came with a chairperson, OT, SLP, and BCBA; we came with 2 BTs, a CC, a BCBA, an OT, and an SLP. We were all well prepared to make our case for Jack, and his progress with ABA through DTT (discrete trial training) was discussed. After reviewing his OT and SLP evaluations, as well as results of a VB-MAPP (an assessment of the language, learning, and social skills of children with autism or other developmental disabilities), it was concluded that the school would accommodate our requests. Our school system has been amazing when services are available, but consistency is key. We’ve seen that the more exposure Jack has to these services, the better he does. At age 4, speech is still a challenge. He’s surely making progress, and we’ll never know if this was a result of our interventions or simply a result of time. Jack is a very empathetic boy, which is not one of your typical autism traits...if anything, quite the opposite. We occasionally question the diagnosis, but his tendency for repetition and need to cover his ears when overwhelmed tells us we’re on the right track.
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Laurent Tao: That’s certainly an adventure, Keith, and a perfect illustration of the importance of being informed and educated about the significant decisions that families with children with autism spectrum disorders must repeatedly face. Those decisions have financial implications, and even more importantly, impact the availability of services, which could ultimately affect a child’s long-term function and progress. It’s a good reminder of the responsibility that MCG has to ensure that our guidelines and care management tools reflect the best evidence available and are accurate and practical. Much thanks to both Keith and Chris for sharing your families’ stories, as they really helped to ground the Round Table Discussion in the everyday challenges faced by children, adolescents, and adults as they try to navigate the healthcare system in search of the right care at the right time.
MCG Experts and Stakeholders Biographies Laurent Tao, MD, MPH, FACP Dr. Tao oversees development of all content solutions across the continuum of care, including production of MCG’s best-practice evidence-based guidelines. Before joining MCG in 2010, Dr. Tao was Director of Physician Advisory Services at Accretive Health and Associate Healthcare Consultant at McKinsey and Company. Clinical roles have included Attending Physician at Cook County Hospital and Assistant Professor of Medicine at Rush University Medical College, where he also conducted research on the topic of racial disparities in health. A graduate of Yale College, he received his medical degree from the University of Chicago and completed his residency training in internal medicine at the New York-Presbyterian Hospital/Weill Cornell. In addition, he holds a master’s degree in public health from Harvard University. He is board-certified in internal medicine. Angela Askren, RN, MSN, CMC Ms. Askren oversees research, guideline writing, and other content development focused on home healthcare and other post-acute care. Before joining MCG in 2007, she worked for large insurance carriers, third-party administrators, and hospital systems and in home healthcare, holding such positions as Vice President of Operations and Director of Utilization Review and Case Management. Her experience includes the development and implementation of a new case management program for a long-term acute care hospital and managing operations for a government-contracted health plan. Her professional focus has been in case management, including utilization review, discharge planning, and disease management. She is a registered nurse and is certified in case management. Keith Berard Mr. Berard is a Senior Software Architect at MCG with over 20 years of experience in software development across several industry verticals, most recently in the healthcare space. He received his bachelor’s degree in Computer Science from Worcester Polytechnic Institute in Massachusetts and joined MCG in 2005. Stacey Popko, MD, MBA, FACP, FAAP Dr. Popko oversees research, guideline writing, and other content development focused on ambulatory care. Before joining MCG in 2014, she was a Senior Medical Director at Cigna Healthcare where she led programs for onsite healthcare, disease management, and case management. Prior to that, she practiced primary care in both the inpatient and outpatient setting in Pittsburgh, Pennsylvania. A graduate of Lehigh University, she received a medical degree from the Medical College of Pennsylvania and completed her combined residency training in internal medicine and pediatrics at MetroHealth Medical Center in Cleveland. She is board-certified in internal medicine and pediatrics. Chris Van Waters Mr. Van Waters leads software development and information technology support for MCG products and offices. He has more than 20 years of experience in healthcare IT leadership roles, most recently as Vice President of IT for K2M, a medical device company. Prior to K2M, he spent more than 13 years at QuadraMed, a healthcare IT company in Reston, Virginia. In 1998, QuadraMed acquired Vision Software, an EDI software company in Austin, Texas, that he had helped start. As QuadraMed’s Vice President of Product Development, Mr. Van Waters managed the development of several major product lines and the integration of more than 20 acquired businesses. He also drove QuadraMed’s adoption of Agile software development methodologies. Monique Yohanan, MD, MPH Dr. Yohanan brings a background that bridges the gap between psychiatry and internal medicine to her work as a Senior Physician Editor at MCG, where she writes and updates psychiatry guidelines. She attended Dartmouth/Brown for medical school, Mount Auburn Hospital (Harvard) for residency, Stanford for a geriatric fellowship, and Johns Hopkins for a Master in Public Health. She is board-certified in internal medicine and geriatric medicine, and her clinical background includes faculty appointments at the University of California, San Francisco and Stanford, as well as serving as a medical director in extended care at the VA Palo Alto. She has given numerous invited lectures and courses at the annual American Psychiatric Association meeting, as well as at other national and state psychiatric meetings.
Cover photo courtesy CHOATphotographer/Shutterstock
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