PEDIATRIC SUBSPECIALTY EXPERT WORK GROUP
January 15-16, 2004
Dr. Merle McPherson, Director of the Maternal and Child Health Bureau’s Division of Children
with Special Health Care Needs, welcomed the new federal expert work group on pediatric subspecialty
capacity. MCHB’s goal for the work group is to improve access to pediatric subspecialty care within a
comprehensive, community-based medical home. MCHB has a long history in pediatric subspecialty
care, focusing initially on orthopedic impairments (“crippled” children). The agency started paying for the
direct provision of subspecialty services and later became involved in the development of craniofacial,
cardiac, and other subspecialties. Currently, MCHB has a legislative mandate to facilitate the
development of community-based, family-centered systems of care. In addition, the President’s New
Freedom Initiative has moved the development of community-based systems of care to the forefront.
National goals for 2010 incorporate six performance measures, including access to comprehensive care
within a medical home, organized service systems, and family partnerships in decisionmaking.
Dr. McPherson called for the group to meet at least twice a year over the next four years.
Working in collaboration with the Bureau of Health Professions and other federal and state partners, the
American Academy of Pediatrics, the Shriner’s Hospitals, the National Association of Children’s
Hospitals, Family Voices, and others, the expert work group will: 1) assess the current problem of access
to pediatric subspecialists; 2) examine the challenges and opportunities for integrating medical home and
subspecialty care; 3) develop a strategic plan.
What National Surveys Show About Pediatric Subspecialty Capacity
Peggy McManus, Co-Director of the MCH Policy Research Center, reviewed what is known
about pediatric subspecialty capacity from national surveys and special workforce studies. Six national
surveys were reviewed: the National Survey of Children with Special Health Care Needs, the Family
Voices-Brandeis Survey, the National Association of Children’s Hospitals’ members, the Survey of AAP
members, the Pediatric Provider Capacity Survey of State Title V Directors, and the Future of Pediatric
Education Survey. Together, these studies reveal that access to pediatric subspecialty care in certain parts
of the United States and for certain subspecialists is problematic. Still, however, national survey
information on pediatric subspecialty care is subjective, conflicting, dated, and often not specific to
individual subspecialties. Overall, the surveys find:
• a sizeable proportion of children and families are experiencing problems with referrals to
• estimates of unmet need for specialty doctors vary;
• children’s hospitals are confronting serious shortages for several pediatric subspecialties,
resulting in delayed care and higher costs;
• pediatric subspecialists are likely to have patient caseloads that are over capacity;
• three years ago, state Title V directors, especially in the south and west, reported inadequate
access to many pediatric subspecialists, particularly child and adolescent psychiatrists,
neurologists, and developmental-behavioral pediatricians; and
• six to seven years ago, nearly two-thirds of pediatric subspecialists believed there was no
need for additional subspecialists in their communities but more than a third perceived a need
Five special workforce studies on pediatric subspecialties also were reviewed. Two of these
studies (gastroenterology and nephrology) were conducted almost 10 years ago, and found an adequate
supply. More recent studies in the late 1990s, in endocrinology and neurology, both found that demand
exceeded supply – by about 15% in endocrinology and 20% in neurology. Current and past studies in
child and adolescent psychiatry services reveal that demand will far exceed supply between 1995 and
2020 – specifically, a 100% increase in demand is projected, but only a 30% increase in supply of child
and adolescent psychiatrists.
Workforce studies on pediatric surgeons and pediatric rheumatologists were brought to the group’s
attention, and there may be others to add to the subspecialty fact sheets, which will be continuously
updated as new information becomes available. Also, rehabilitation medicine was added to the list of
pediatric subspecialties to include.
Family, Provider, Children’s Hospital, and Title V Perspectives
Polly Arango, parent of a young adult with special needs and a member of Family Voices Board
of Directors, described the obstacles families experience in their efforts to access pediatric subspecialty
care, based on responses from a ListServe query of Family Voices members. Families from nine states
responded with the following concerns:
• Wait times are lengthy -- often on the order of 6 months, and in one case, 9 to 12 months to
see a behavioral health specialist; travel times to tertiary centers are onerous, particularly in
rural areas, resulting in significant amounts of lost work time for parents and lost school time
for children; and subspecialist office hours are infrequent. As a result, pediatricians are
encouraging families to go to emergency rooms.
• Burdensome cost-sharing obligations for subspecialty care affects access, particularly since
so many subspecialists are out-of-network; there is no reimbursement for care coordination;
many subspecialists no longer take Medicaid; and Medicaid caps the number of visits to
• Because capacity is so limited, there is often no choice among pediatric subspecialists and
also families face difficulties obtaining a second opinion.
• MCO networks often include only adult specialists and change their provider panels
• Children with very complex conditions face challenges coordinating care among the many
types of physicians and the multiple systems involved, and transitions from pediatric
subspecialists to adult specialists is seldom addressed.
Chris Stille, MD, a member of the University of Massachusetts Pediatric Primary Care Group
Practice and Assistant Professor of Pediatrics at the University of Massachusetts Medical School,
discussed pediatric capacity problems in terms of access and commitment.
• With respect to access, Dr. Stille noted that primary care physicians and subspecialists engage
in a lot of parallel work without much discussion and without information being shared on a
real-time basis, which leads to duplication and inefficiencies. There are many unnecessary
visits to subspecialists, and, in order to reduce this, the scope of each provider’s expertise
needs to be used more effectively. In addition, families have a role to play in the
coordination between primary care physicians and specialists, and they, too, need access to
• With respect to commitment, primary care physicians find it difficult to commit to
collaboration because it entails non-clinical work and the system is structured to reward
seeing more patients, writing more articles, and getting more grants. Collaboration is not
• Dr. Stille referred the group to VA Service Agreements as an example of collaboration.
(These are part of an Institute for Healthcare Improvement project called Advanced Clinical
Access (ACA) that includes 10 key changes for reducing delays and improving access.)
Work group members noted that the long-term survival of large groups of children with serious
chronic conditions with complex care requirements have contributed to the capacity problem.
Specifically mentioned as examples were prematurity, leukemia, cystic fibrosis, autism, obesity, diabetes,
and also antibiotic resistant care.
Pete Willson, Vice President for Public Policy at NACHRI, and Pat Magoon, President and CEO
of Children’s Memorial Medical Center in Chicago, discussed the difficulties children’s hospitals face in
recruiting and retaining pediatric subspecialists. Over the last four years, workforce capacity has risen
higher on the list of children’s hospitals’ concerns and is only expected to worsen. In addition, Medicaid
reimbursement has become so bad that children’s hospitals are having a very difficult time recruiting
subspecialists. Moreover, some children’s hospitals have been forced to close entire departments because
they were staffed by subspecialists who are international medical graduates who have had to leave the
United States. Because the shortage is so severe, children’s hospitals are now competing against each
other for subspecialists – a very debilitating process. The two issues – pediatric subspecialty shortages
and Medicaid reimbursement problems – are merging. That is, without improving reimbursement it will
be difficult to retain and expand subspecialty capacity. Reference was made to the Wall Street Journal
article, “The Informed Patient: Why You Can’t Find a Doctor for Your Kid – As Specialists Grow
Scarcer, Families Turn to Telemedicine: The Case of the Winking Baby.”
Fan Tait, Director of Utah’s Title V Program for Children with Special Needs and a pediatric
neurologist, discussed the challenges facing Title V programs responsible for coordinating systems of
• Some states, like Idaho, only have one person running their Title V program. With level
funding from the federal government, Utah and other states are fighting to maintain services.
Coupled with state budget cuts, many Title V CSHCN Programs are reducing or eliminating
support for direct services. Dr. Tait noted that if Title V agencies do not provide funding
support for pediatric subspecialists in multidisciplinary clinics, they are not likely to exist.
Utah has only one children’s hospital in Salt Lake City that serves five states. When children
return out-of-state after a hospital admission, they are often lost to follow-up and there is little
opportunity for collaboration or coordination.
• Overall, Dr. Tait expressed concern about health disparities, difficulties achieving
regionalization, and excessive wait times (2-3 months for pediatric neurologists in Utah and 9
months in Florida). She also noted that Title V, Medicaid and SCHIP, and other state
programs need to improve their coordination. With respect to managed care, prior
authorization and utilization reviews continue to be time-consuming for subspecialists and
cause bottlenecks in service delivery.
• To address pediatric subspecialty capacity problems in Utah and neighboring states, the Title
V agency, through its medical home project, has developed web-based “modules” for seven
conditions -- ADHD, celiac disease, cerebral palsy, congenital heart disease, Down’s
Syndrome, hearing impairment, and seizure disorder (http://medhome.med.utah.edu).
Physicians can access a variety of information from the web-based modules, including a
description and prevalence of the condition, tools used in clinical assessment and therapy,
detailed information about a variety of issues related to providing comprehensive care,
practice guideline checklists, coding guides, published guidelines, professional and
community resources, and patient education material.
Overview of the Problem, Causes, and Implications
Harriette Fox, Co-Director of the MCH Policy Research Center, led the discussion on the
problem of pediatric subspecialty capacity, its implications, and causes. She asked the group to examine
the problem not only in terms of supply or “pipeline” but also in terms of the severity and extent of the
access problem for different subspecialties; its implications in terms of health care quality, health status,
racial and ethnic disparities, and primary care provider burdens; and its causes related to workforce
supply issues and insurance practices. While it was generally accepted that current pediatric subspecialty
capacity is inadequate, the group did not distinguish if particular subspecialties have more acute problems
than others or if there are geographic variations in capacity and access. Likewise, the implications for
families and providers were not discussed. The issues that were discussed are organized below according
to workforce, organization, and reimbursement.
• Changes in medical school and fellowship training will take place over the long term. To
influence the current situation, one needs to look at the process of care delivery and a broad
array of health care providers serving children, including nurse practitioners, family
physicians, and adult specialists. Also, the larger context of physician shortages in general
and specialist shortages in particular is important to keep in mind. The group made reference
to a forthcoming article by Gary Fried showing more children are relying on pediatricians,
and also an Institute of Medicine report on academic health centers.
• Limited medical education training in pediatric subspecialties and continuing medical
education in the care of children with chronic conditions adversely affect capacity. One
needs to look at training from the bottom up, starting with children and families. Residency
experience in specialties is not long enough, and residents are often trained by physicians
with relatively few years of experience. In addition, the “urban” model has become the
model of training pediatricians and it is not appropriate for physicians practicing in rural
areas. Also, the explosion of knowledge that has occurred in the last decade is exceptionally
difficult to put into a 33-month training period. With respect to continuing medical education,
the expectation that providers will seek unpaid continuing education on their own time is
problematic. In contrast, airline pilots are paid to receive annual recertification training. The
MCHB has been involved in supporting interdisciplinary training and education of primary
care providers. The group was interested in learning more about this work.
• Immigration rules governing J-1 visas are increasingly restricting the ability of international
medical graduates (IMGs) to practice in the U.S and are likely to cause more acute workforce
shortages, particularly in underserved areas, in the future. IMGs constitute as much as 30%-
40% of the pediatric subspecialty workforce and about 20% in general pediatrics. However,
endocrinology, neurology, and psychiatry have 60+% who are IMGs. The group
recommended that IMG status from the American Board of Pediatrics be added to the
subspecialty fact sheets.
• The amount of time physicians spend in direct patient care will be reduced as more women
enter the pediatrician workforce. Research shows that female physicians are more likely to
want to work part time. It was noted that 11% of female pediatricians indicated a desire to
practice on a part-time basis. Physicians who practice part-time are unlikely to take on
leadership roles or become physician-scientists. Family life and lifestyle choices are
becoming more important for all physicians.
• Residents with substantial debt are more inclined to enter private practice as a general
pediatrician than become a subspecialty fellow because of the income differences. Also,
there are substantial (2-3-fold) differences in income between adult and pediatric specialists.
• Role confusion between generalists and specialists and among specialists is a significant
issue. For example, with regard to ADHD – how does one distinguish what a neurologist and
a neurodevelopmental specialist should do? With further role definition, a needs-based
review can be done.
• Parallel and duplicative care occurs because physicians are not able to communicate with
each other efficiently. A subspecialist may repeat tests that a general pediatrician has already
performed because of the lack of shared information.
• The ability of people who are not native English speakers and who have different cultural and
environmental norms to obtain pediatric subspecialty care is a big concern, and one about
which little is known.
• Caution was noted about increasing quality and regulatory requirements because of the
burdensome bureaucratic requirements.
• Inadequate reimbursement encourages pediatricians to reduce Medicaid participation.
Medicare reimbursement can be 2-3 times as much as Medicaid for evaluation and
• Insurers often do not pay for consultations with other physicians or travel time. Also, insurers
often deny payment to developmental-behavioral specialists for treatment of ADHD because
of their mental health carve-out arrangements. Care coordination is seldom reimbursed.
• Reimbursement for chronic childhood care is inadequate and difficult to access because of
existing silos of funding at the state level. Unless we can modify our reimbursement
structures, which are designed for adults, we will not achieve success in improving access.
What We Need to Know About Pediatric Subspecialty Capacity
Peggy McManus facilitated a group discussion of what research is needed on the following
topics: supply, demand, clinical care and outcomes, family perspectives, and financing and managed
care. The group was concerned that figuring out what we need to know is premature because the
problem that the work group intends to address has not yet been adequately defined and the objectives
have not been specified. There was, however, strong agreement that any work done to assess the
pediatric subspecialty capacity problem must look at impacts or consequences in terms of lives lost or
impaired, lost productivity; and unnecessary costs to business and government. The group also agreed
that gathering anecdotes from families and providers is important along with national survey
information and other research-based information. Since there are so few pediatric subspecialists in
the U.S., caution was noted regarding the need for new numbers to justify that shortages exist. Rather
it was suggested that there be an expert consensus based on projections of future needs. Another note
of caution was made regarding the use of current and past information rather than future projections
of needs. A series of other suggestions were made.
• What will be the future incidence and prevalence of childhood chronic conditions; what changes
in survival are likely to continue; and what are the implications for more pediatric subspecialists
to meet these needs? The group recommended reviewing the work of Maureen Hack who
projected needs in neonatalogy. By showcasing a few specific conditions (where there are
evidence-based guidelines), it would be possible to project future demands.
• What can be learned from existing actuarial databases, state Medicaid claims information, and
national health expenditure surveys regarding current and projected utilization patterns among
children with chronic conditions?
• What new medical treatments are likely to come available in the next few years that may affect
the care of chronic childhood conditions?
• How is the decreasing supply of family physicians and the increasing supply of nurse
practitioners likely to influence future pediatric practice patterns?
• Should general physicians, adult specialists, and physician extenders be used to expand the
current capacity of pediatric subspecialists?
• What needs to be done to make pediatric subspecialties more attractive?
• What are the main bottlenecks in establishing an adequate supply of pediatric subspecialists?
What do we know about fellowship fill rates?
• What is an appropriate continuum of roles and functions of generalists and specialists in the care
of chronic childhood conditions?
• What is the extent of parallel or duplicative care being provided by generalists and specialists?
• What resources can be provided to general pediatricians to help them better manage care of
children with special needs in their offices? How should this differ for rural practices?
• What is the role of new technologies, such as telemedicine, in improving access to pediatric
• We need more detailed surveys from children and families, with information on the effect of the
shortages and problems with the process of coordinating primary and specialty care -- the
morbidity and mortality that results from delayed care and lengthy distances to providers? Costs
to families? Trips to emergency rooms? What other effects can be documented? A forthcoming
article by Steve Berman’s about lost work, emergency room use, etc associated with the care of
chronic conditions was recommended.
• If Medicaid reimbursement rates and other financing problems do not change, how can the supply
of pediatric subspecialists be increased, especially in light of student debt, which now averages
• What evidence exists for improved results with higher reimbursement?
• How can financial incentives be structured to support continuing medical education?
Mapping Out Objectives for Improved Access to Pediatric Subspecialty Care
Monique Fountain, Director of MCHB’s Medical Home Initiatives, led the discussion on
objectives for the expert work group. Following small group discussions, several revisions were
suggested to collapse and reorganize those tentatively put forward by the Buireau. The following three
objectives attempt to capture the group’s discussion, but may be revised.
1. Define the scope of current and projected pediatric subspecialty capacity problems and their
effects on morbidity, productivity, quality, and cost.
2. Identify promising approaches for improving the shared management of children with chronic
conditions among pediatric subspecialists and medical home providers as well as other strategies
for improving workforce capacity, organizational efficiencies, and financing.
3. Develop policy recommendations and a tactical plan to improve access to pediatric subspecialty
care within the context of comprehensive, community-based medical homes. Included in the plan
will be an examination of Title V’s role and responsibility and an evaluation strategy for
assessing continued progress. The tactical plan will identify partners in federal and state agencies,
Congress, medical professional organizations, family advocacy groups, employers and insurers,
and the media to implement policy, practice, and research recommendations.
Long-Term and Short-Term Solutions and Strategies
Bonnie Strickland, Chief of MCHB’s Integrated Services Branch, facilitated a discussion
of potential solutions and strategies related to workforce, organization, and financing. The group
commented on the need to look at a mix of evidence-based and anecdotal information and non-
interview techniques and models, not just focus groups. Using many different methodologies
and sources will be important. The American Academy of Child and Adolescent Psychiatry’s
(AACAP’s) approach to addressing their capacity problems was brought up. AACAP first
studied why there was a shortage, then developed recommendations, and adopted a 10-year
action plan. The focus of AACAP’s efforts is on increasing the workforce through recruitment,
mentoring, and training. The organization is also working on financing strategies through a bill
introduced by Senator Patrick Kennedy (D-RI). Also, the group discussed the importance of
engaging support from the pediatric subspecialty community in this work – through AAP
sections and various specialty societies. Two project initiatives were also discussed. The Child
Health Corporation of America and NACHRI are developing a proposal to examine the use of pediatric
nurse practitioners and technology to extend the capacity of pediatric subspecialists, and the American
Board of Pediatrics (ABP) is working on the future role of pediatric subspecialists, similar to that being
done by the American Board of Internal Medicine. Since the late 1990s, the ABP recognized pediatric
subspecialty shortages as a concern.
• Pediatric residency outpatient electives should be improved to make sure outpatient training is
just that. Further training in resource use and care coordination also is needed.
• Medical home training from the pediatric subspecialist perspective should be re-conceptualized,
based on a family and community-based perspective and also evidence-based guidelines.
• Training time for child and adolescent psychiatrists should be reduced and mental health training
of PCPs should be increased.
• The availability of specially trained pediatric emergency medical transport providers should be
improved. There was a recommendation to examine state funds for bioterrorism.
• Issues pertaining to diversity and females in the workforce should be examined further, and it was
noted that the AAP’s Committee on Pediatric Workforce can be of assistance on this subject.
• Additional information about pediatric subspecialist debt levels should be collected. This
information is available from AAMC.
• Over the short-term, the focus should be on improving the resources currently available. Need to
think “outside of the box.”
• The focus should be on the needs and demands of families to assure that the organizational
approaches are relevant. More needs to be known about families’ role in coordinating primary
and specialty care.
• Promising approaches for improving shared management should be identified -- such as the
training of neurologic associates in Utah, the development of web-based protocols to educate
generalists, bringing subspecialists to the general pediatricians’ offices, the VA service
agreement, community teaching rounds, and psychiatric consultation guidelines. A
recommendation was made to examine child psychiatry literature for innovative approaches for
interacting with primary care providers.
• Models of care that work for children with complicated care needs should be reviewed.
• A framework, such as the chronic care model developed by Ed Wagner (at the MacColl Institute
for Healthcare Innovation) and adapted for use by the Medical Home Learning Collaborative
(sponsored by the National Initiative on Children’s Healthcare Quality (Charles Homer) and the
Center for Medical Home Improvement (Carl Cooley)) should be used.
• The role of telemedicine to alleviate the need to travel long distances should be reviewed.
• Family-to-Family Health Information Centers, which currently operate in a small number of
states and provide information and resources to families whose children have special needs,
should be expanded.
• Specialized managed care organizations for children with special health care needs, such as is
used in Michigan, should be examined.
• Several references were made to expert work -- Barbara Starfield’s research on primary care
outcomes, IOM’s report on academic health centers, Gary Fried’s work on ambulatory care
utilization patterns, Elizabeth Jameson’s work on children in the foster care and juvenile
justice systems, and Bodenheimer’s work in JAMA.
• Shriners’ Hospitals have good anecdoatal evidence of the effectiveness of medical homes. Also
their website has best practice information.
• Coordination with the Bureau of Health Professions’ Center for Workforce Analysis (Vince
Carry, Andy Jordan – designation of underserved areas, Mike Barry – J1 visas) was
recommended, along with a review of its six cooperative agreements to determine what related
activities are underway.
• Medicaid reimbursement should be increased and Medicaid’s “equal access provision” should be
enforced (which requires that provider payments be sufficient to enlist enough providers so that
care and services are available to the same extent that they are available to the general population
in the geographic area).
• A Medicaid Payment Advisory Commission should be established to advise Congress and CMS
on physician reimbursement policies related to state Medicaid programs similar to the Medicare
Payment Advisory Commission (MEDPAC) with respect to Medicare payment policies.
• Financial incentives should be identified to improve outcomes and support the medical home and
care coordination. Identify innovative opportunities exist through Medicaid. Reference was made
to incentives adopted by United HealthCare, Aetna, and BCBS.
• Financing models for group or multidisciplinary care should be identified. Reference was made to
a 3-day diabetes education programs conducted by team of specialists.
• Comparisons of the income between pediatric subspecialists’ and adult specialists should be
prepared. This information is available through the Association of Administrators in Academic
Pediatrics and the American Medical Group Association.
Merle McPherson led the discussion on next steps by reviewing the activities that MCHB could
support at this time. Specifically, the Bureau is prepared to address the first two of the original objectives
-- assessing the current problem of access to pediatric subspecialty care, and identifying best practices in
medical homes and pediatric subspecialty collaboration. Working with the MCH Policy Research Center,
the Bureau will improve the knowledge base about the scope of the problem through focus groups and
other strategies, and working with its medical home grantees, MCHB will gather information on
promising practices. Dr. McPherson thanked the group for its important contributions.