The Impact of a Physician Shortage on Children

Dr. Brad Schlaggar (BS): Welcome to Your Child's Brain, a podcast series produced by Kennedy Krieger Institute with assistance from WYPR. I’m Dr. Brad Schlaggar, pediatric neurologist, and President and CEO of Kennedy Krieger Institute. In the United States alone, there are nearly 20 million children with developmental, cognitive, behavioral, and or learning disorders. It's widely recognized that the needs of children with these issues are growing, both in number and complexity, while at the same time, access to physician specialists who can provide expert care for developmental issues is increasingly challenging. That access challenge is in the context of an ever growing understanding that both early identification and early intervention are paramount to optimizing developmental outcomes. What sort of physician specialists care for children with neurodevelopmental challenges and how many of them are there? Well, in the US, there are around 1,200 neurodevelopmental disabilities specialists, about 2,000 child neurologists, and about 800 developmental and behavioral pediatricians. That's around 4,000 developmental specialists for roughly 20 million children with developmental issues. We have a crisis right now as there are many children in need and not enough physician specialists to provide care for them, resulting in increased risk for delayed diagnosis, longer wait times for treatment, and consequently suboptimal outcomes. In addition, with increasing numbers of children surviving pediatric onset conditions resulting in complex chronic conditions often with disability, there's also an ever growing need for clinicians who can welcome graduates of pediatric care into their practices. The research indicates that the lack of disability competency and interdisciplinary training among medical professionals, including physicians, contributes to the lack of equitable health care for people with disabilities across the nation. While a limited number of medical schools and post medical school residencies in the US do provide some degree of disability competency training, the overwhelming majority do not. Standard comprehensive cross disability, clinical care, education, and training medical, nursing, and other healthcare professionals is essential for a better educated healthcare workforce, trained with an understanding of disability. What can be done? What can organizations, policy leaders, and medical schools do to address the shortage? What can parents and caregivers do when faced with long wait times for treatment? Today, we're going to address some of these critically important questions with two of my exceptional colleagues at Kennedy Krieger. Dr. Miya Asato, is a pediatric neurologist, and the vice president of training at Kennedy Krieger Institute. She's an associate professor of neurology and of pediatrics at the Johns Hopkins University School of Medicine. She's program director of the Neurodevelopmental Disabilities Residency at Kennedy Krieger, where she also directs the nationally recognized Maternal and Child Health Leadership Education in Neurodevelopmental and Other Related Disabilities Program, shortened to LEND, which provides graduate level interdisciplinary training to clinicians with a focus on neurodevelopmental disabilities. Dr. Mary Leppert is a developmental pediatrician, the Department of Neurology and Developmental Medicine at Kennedy Krieger Institute. In addition, Dr. Leppert is an associate professor of pediatrics at the Johns Hopkins University School of Medicine. Her focus is education on neurodevelopmental disorders, and she's the founder and director of the Teaching Excellence and Neurodevelopment. That's the TEND program. She is the director of Kennedy Krieger: Project ECHO and is the chief editor of the Kennedy Krieger Instruction and Neurodevelopmental Disorders KIND Curriculum. Welcome Miya and Mary. Mary, let's begin our discussion with you. What do we mean by neurodevelopmental disorders? How common are they?

Dr. Mary Leppert (ML): Neurodevelopmental disorders are really conditions that are based in the brain or the nervous system. They tend to manifest as atypical or delayed development or atypical movement, thought, learning, understanding or behavior.

BS: How frequent do we see them?

ML: Actually, the most recent statistics tell us that 17% of children in the United States between the ages of 3-18 have a developmental disability. That's just a piece of it, because if you look at the total of children with mental health, emotional, developmental and behavioral disorders, it's more like one and four children. What's important is that not always are these thought of as disabilities. They're all brain based, and they're much more common in children with disabilities.

BS: What are some examples of the disorders that we're talking about and how are they identified?

ML: The identification really comes from concerns being raised either by the appraisal of parents or educators or from developmental screening in the pediatric office. But these are disorders that there are some that present very early in childhood like motor disorders, cerebral palsy, intellectual disability, autism, and vision and hearing impairment. These all present pretty early, and usually with parents' concerns, and they're almost always identified or diagnosed by physicians. In contrast to those early identified disorders, we have disorders that are more common but present later, like communication disorders, learning disabilities, ADHD, and some of the emotional and developmental consequences of early childhood trauma. Those are things that present later in childhood, either late preschool years or early elementary or middle childhood. They often come to the attention to us because teachers have identified it or therapists have identified a problem.

BS: Who is responsible for diagnosing this these disorders? For example, does somebody have to be a specialist to make a diagnosis? Then how are they diagnosed? What tools are used? Are they clinically based? Are there tests for them?

ML: The diagnosis are usually made by pediatricians or by subspecialists that pediatricians refer to. Pediatricians use the wealth of power that they have in their practices by knowing their patients, being able to know the family history and track the development. Pediatricians are well trained to make developmental diagnosis. They're not all confident in doing so. But I find that more recently, they're referring to specialists because not only will the specialist make the diagnosis, but they'll also look for the cause of the problem and make much more specific recommendations for interventions or therapies.

BS: Miya, given that what we just heard about pediatricians, why is a specialist helpful in the diagnostic process?

Dr. Miya Asato (MA): Well, a neurodevelopmental specialist is a type of physician who has completed specialty training in pediatric medicine, and then additional specialty training in either neurology with a special focus on developmental disorders or developmental behavioral pediatrics. These physicians have particular training in the evaluation and diagnosis of both the common disorders that Mary was talking about, autism, ADHD, but also rare conditions such as genetic disorders, and some of those occur very rarely.

BS: Given the need for specialist knowledge, is training in medical school sufficient? How about post medical school residency training?

MA: When a physician graduates from medical school, they may be familiar with some of the common conditions such as autism or ADHD, but there are many aspects of the diagnostic and medical management expertise that can only be learned during the residency and fellowship period. Medical school itself provides a broad type of knowledge and training, but then during the residency and fellowship period, doctors learn to take care of patients over an extended period of time, which is a really important part of the learning experience in developing clinical mastery and understanding how development occurs in children and youth.

BS: At the front end, I talked about briefly, how many developmentally focused specialists there are in the country. But let's revisit that. Also, it's not like they're spread out uniformly across the country. How many of them are there and where are they located?

MA: When we talk about specialists, we can talk about board certified specialists. These are physicians who have completed specialized programs, passed an examination. There are about 1,200 board certified specialists. But this also includes different types of physicians. It includes child neurologists who have neurodevelopmental training. It includes developmental behavioral pediatricians. But there are other physicians that can also contribute towards the care, the diagnosis, management of children with neurodevelopmental disabilities, such as physical medicine rehabilitation. Those physicians are specialized in pediatric disabilities, and they're about 300 of those professionals nationally. There are child and adolescent psychiatrists who also know a lot about developmental disorders. Although it's not part of everyone's training, a portion of the child and adolescent psychiatrists, they're about 10,000 child and adolescent psychiatrists may receive specialized training because they're interested in that area and may feel able to care for children with developmental disabilities. But the number of NDD specialists nationally may often be clustered in academic centers, and in order to meet the needs of the public, the American Academy of Pediatrics reports there are about 20 million children with developmental concerns. Even those few thousand of NDD specialists will really not meet this huge need.

BS: I guess to this point about academic centers, that's where they tend to be. Of course, those are in population centers, so it's across the country. In less populated parts of the country, there are far fewer such specialists driving their shortages overall, but in certain regions, there's even greater shortage. Why is there a shortage of physicians specialized in neurodevelopmental issues? What are the factors that led to this? Is it a problem that we see in other parts of the world as well?

MA: One of the biggest challenges is funding in order to offer this type of medical care. As you know, NDD evaluations can really take much longer than some other specialties, and so not that many children can be seen on a given day in this specialty. The hospital and the physicians are often not compensated for the significant time that's needed for a comprehensive evaluation. In addition, the neurodevelopmental programs are often understaffed in many children's hospitals because of the large amounts of resources that are needed. It's important to know that physicians often graduate from medical school with high amounts of educational debt. And since the training period to become a developmental specialist can take up to six or seven years, a low number of physicians will choose these longer training pathways because they need to get into the workforce and start paying back their educational loans. Or they may choose specialties that may offer higher salaries. Now, there are shortages of neurodevelopmental specialists in virtually all parts of the country, and families often have to wait long periods of time for an initial appointment. Outside the US, as you mentioned, developed countries will have similar problems, but in lesser developed countries, there is a limitation of specialty care in general, particularly in pediatrics, and often there are just no neurodevelopmental specialists unfortunately.

BS: Mary, Mia just made the point that it may take a long time for a child, depending on where they live, to see a neurodevelopmentally focused physician. It underscores the importance of pediatricians making the diagnosis and providing care. In what ways can pediatricians contribute to making these diagnosis and providing care, perhaps prior to or in tandem with the specialists?

ML: Pediatricians, really in their residency training, are armed with the training that they need. They have a month of developmental pediatrics and another month of mental health. But what we're learning from graduates from pediatric residency programs is that it's simply not enough training to give them either the knowledge or the confidence that's not clear which to manage these children independently. I think that there is a few formats that we can use to try to elevate the knowledge and confidence of our primary care doctors, especially those that are serving children in really rural or underserved areas.

BS: Mary let's talk some more about how families can work with their pediatrician if they don't have access to this kind of specialty care.

ML: Families can really work with their pediatricians in a number of ways. The American Academy of Pediatrics have outlined four or five different ways that we can try to increase access for children to specialty care. Some of them are patient centered and some of them are practice centered. Telemedicine, which has really boomed since the onset of COVID, is one of the most direct means for a family to connect with a subspecialist. It is very effective. The downside is that it's one patient at a time and the telemedicine services now have wait lists as well. We've reduced the burden of travel, but we haven't really reduced the burden of a wait list with that forum. There are others, though these are more practice centered, but a number of practices now are moving towards integrated care models where they will co-locate somebody with specialty services in their practices either continually or periodically to get consultations in the practice for children. What psychiatry has done, which is really, I think a brilliant model, is they've started child psychiatry access programs, which are really warm lines. It's a phone line where a primary care doctor can call a psychiatrist and get a consultation on a patient urgently, usually within 12 hours or so, and problem solve that patient with the psychiatrist in real time. Right now, the majority of states across the country have a child psychiatry access line. The other thing that we're using more and more often is a program called Project ECHO, where we're trying to combine case consultation and teaching to elevate the expertise of primary care doctors and really embolden them to care for children with disabilities in their medical home on their own.

BS: Mary, say a bit more about Project ECHO. Why is it called ECHO? A little bit about the history of it and the experience that you've had using this model for capacity building for specialty care.

ML: Project ECHO stands for the Extension for Community Healthcare Outcomes. It's a 20-year-old program now that was started in New Mexico by a man named Sanjeev Arora. He was a gastroenterologist who decided that he really needed to bring training on hepatitis C to primary care doctors so that they could care for some of the more everyday cases of hepatitis C and really refer the more complicated kids to him in New Mexico. In doing so, he cut his wait list from eight months to about two weeks, which is pretty impressive. We came across this forum in 2016 and decided that, given the workforce shortage that Mia was talking about, that this might be the way to try to reach primary care doctors to care for children with disabilities in the medical home. What happens is it's a longitudinal continuing medical education program where primary care doctors log on once a week, and we have a one hour session where we problem solve their cases. They present cases to us and with colleagues in other communities and with our expert team here at Kennedy Krieger, we problem solve the cases for them or with them and then we finish up our one hour session with about a 15 minute teaching session. The beauty of Project ECHO is it brings the knowledge and the expertise to the provider rather than bringing the patients to the specialist. The other thing that's really not recognized with Project ECHO is that case consultation. These primary care doctors are getting case consultation on their toughest cases, with a group of experts and there is no without consideration of the child's insurance, or background, or distance. It really is a very big service to the under insured because they're getting the access that everybody else is getting. I will tell you off-handedly that it has been probably the most rewarding thing I've done in my career.

BS: It's a high impact mechanism that's really generalizable to all kinds of especially training, capacity building solutions. But let's go to the issue of how children with neurodevelopmental issues, what happens to them when they reach adulthood. What happens to their care? Are their adult physicians ready to take over?

ML: Another concern that adult medicine physician express is that they feel unfamiliar with patients who have neurodevelopmental conditions, and they may be uncomfortable working with people with intellectual disabilities or autism. Another concern is that specialists sometimes don't accept public insurance, and that may inadvertently exclude our patients who have neurodevelopmental disabilities. All of these challenges can make it hard for families to find an adult medicine specialist to take over their adult child's medical care.

BS: What are some of the solutions then, I mean, that's a multitude of issues that lead us to the situation that we're in, what do you see as some solutions?

ML: I think in that line of thinking, training is a big piece of it, as well as research. Some medical schools now are providing exposure to neurodevelopmental disabilities, which helps familiarize doctors at a very young stage of their professional development to gain familiarity with the impact of disability on daily life. In addition, once someone is a health professional beyond medicine but nursing, other health professions, there are trainings in healthcare settings that help professionals gain skills in meeting the needs of patients with different kinds of disabilities. But this really needs to be expanded a lot more so that all patients can be accommodated in all settings. You know that the National Institute of Health really made an important recognition recently, and that was to recognize people with disabilities as a population who may be experiencing health disparities. That recognition hopefully will help promote more research, as well as training and opportunities so that we can bridge some of these gaps in the care of people with disabilities and address that through training and research.

BS: I just want to underscore the point you made a moment ago, that because of the successes of pediatric care, a very different world than the three of us lived in when we were in training, the successes of pediatric care, there's an ever increasing number of individuals surviving into adulthood, not having had that pediatric onset illness cured, but turned into more of a chronic complex condition. We anticipate that the number of individuals in that situation will continue to grow because care continues to improve. We really have to get our heads around the solution space for addressing this transition into adult level care. At the introduction I mentioned, the LEND Program that you direct, Miya, can you define the grant and its mechanism and what its purpose is and how it may contribute to our solution space?

MA: Funding for training is definitely needed. In addition to the shortages of all the different specialty doctors we mentioned, it's nurses, there's a shortage of mental health specialists, such as psychologists, social workers, as well as the different therapists; physical therapy, occupational therapy speech, nutritionist, audiologist. The list goes on and including educational disciplines that need more training in neurodevelopmental disabilities, because when we think about social determinants of health, there are important aspects of health that really go beyond the health care settings. Starting in the latter part of the 20th century, the Maternal Child Health Bureau began funding centers around the country. Kennedy Krieger was one of the first training programs. This is called the LEND Program, standing for Leadership Education in Neurodevelopmental and Related Disabilities, kind of a mouthful, so LEND is a lot easier. But these centers were established, and the purpose of this vital funding is to ensure that there is the next generation of trained professionals who know how to identify conditions such as autism, intellectual disability, cerebral palsy, and that there are specialized centers who can promote evidence based practices and conduct research. Our trainees are taught about disability law policy, how to advocate, how to evaluate children with disabilities. By that investment in professional training, our training outcomes show that most of the professionals will stay in the field and become leaders in their communities and professions.

BS: Mary, what are some of the options that exist for a family who is struggling, trying to gain access to a specialist for their child with neural developmental issues? How would you guide them for options that they may have?

ML: Always, I think that the first and best option is for a family to start with their primary care provider, whether that's a pediatrician or a family practice or a nurse practitioner, who are going to know their local resources and do the preliminary evaluation, and then hopefully hook up families with both services and specialists if there's a need. But parents who have young children and who aren't really familiar with what may be typical or not typical development can access the CDC Act Early web page. They're going to find videos on child development, and what are signs for developmental concerns. I think they're very good at pointing out what are red flags. Also, connections to early intervention or early evaluation services.

BS: Mary, that's an excellent place to end, and pointing out resources, we can include links to those resources on the web page for this episode. Thank you to our guests, doctors Miya Asato and Mary Leppert. We hope that you, our listeners, have found this discussion about the need for expanded training opportunities and education for children with neural developmental disorders both interesting and informative. Please check out our entire library of topics on Your Child's Brain at wypr.org, KennedyKrieger.org/ycb, or wherever you get your podcasts. You've been listening to Your Child's Brain. Your Child's Brain is produced by Kennedy Krieger Institute with assistance from WYPR and producer Spencer Bryant. Please join us next time as we examine the mysteries of your child's brain.