In the United States, approximately 1 in 25 children are considered medically complex. The number of children with complex health care needs is expected to double in the next decade, as advances in technology and medicine reduce mortality rates.
These children typically require care by one or more pediatric specialists, as well as access to services beyond the health care system.
In California, over half of our children are enrolled in Medi-Cal and roughly 200,000 children are enrolled in the California Children’s Services (CCS) Program, which serves children and youth with complex health care needs. A majority of children with CCS are children of color, and over 90 percent also qualify for Medi-Cal.
The demand for complex care is on the rise, and at the same time access to care is rapidly deteriorating in California, leading to a perfect storm before us.
According to a survey conducted in 2023 by an independent research firm, roughly 1/3 of specialties had wait times over 3 months, and wait times for a number of core specialties notably increased from 2019. A separate survey of families also confirmed these concerning trends. The final report and corresponding fact sheets can be accessed below.
Multiple factors contribute to the challenges with adequate access to specialty care. These factors and needed solutions were examined in a comprehensive study commissioned by the National Academies of Sciences, Engineering, and Medicine. This work culminated in a final report titled The Future Pediatric Subspecialty Physician Workforce: Meeting the Needs of Infants, Children, and Adolescents.”
Key areas that must be addressed to improve access to pediatric specialty care include:
Addressing chronically low Medi-Cal reimbursement rates
Pediatric subspecialists are critical safety-net providers in this state and serve a disproportionately high volume of Medi-Cal patients, For some institutions it can be upwards of 75% of its total patients, such as Children’s Hospital Los Angeles. This makes pediatric subspecialists heavily reliant on Medi-Cal reimbursement, yet California has one of the lowest Medicaid reimbursement rates in the U.S and rates have remained stagnant for over 20 years. Medi-Cal reimburses far less than Medicare for similar services.
A key recommendation of the NASEM report is to bring all pediatric codes in Medicaid to parity with Medicare. The American Academy of Pediatrics also endorses this solution. Proposition 35, which voters will decide on during the November 2024 election, represents a historic opportunity to realize this recommendation and stabilize rates for Medi-Cal physicians long-term.
Insufficient number of pediatric subspecialists
National data shows concerning trends in the number of medical school graduates entering pediatrics and students choosing to pursue sub-specialization, which requires 3-5 years more of training. More pediatricians out of school are opting for general practice or hospitalists tracks due to postgraduate debt, and amount of training time and cost in lost salary to become a pediatric subspecialist. Multiple specialties have less than a 50 percent fill rate in their fellowship slots.
The NASEM report recommends greater investment in pediatric graduate medical education and loan repayment programs to incentivize medical students to pursue pediatric sub-specialization.
CSCC members have benefited from the Prop 56 Loan Repayment program here in California that has provided over 200 loan forgiveness awards to practicing pediatric subspecialists. More details on this program can be found here: https://www.phcdocs.org/Programs/CalHealthCares.
Geographic disparities
In California, pediatric subspecialty care delivery is regionalized to have appropriate patient volume, and allow for optimal specialization by condition. However, access to and utilization of pediatric subspecialty care and facilities are also adversely impacted by the uneven distribution of providers and potentially the availability of specialty care facilities. Most children’s hospitals are concentrated in more densely populated areas, leaving the Central Valley and rural north with lower concentrations of specialists.
Racial/ethnic, socioeconomic and language barriers
The majority of children with complex health care needs, are children of color and are more likely to be lower in socioeconomic status. Access to and utilization of care, are exacerbated by socioeconomic and racial differences. Language barriers can also decrease access to care, by impeding patient understanding, and potentially decrease patient’s adherence to treatment.
Inadequate referral process and communication
Effective communication between a primary care physician and specialist is crucial in making appropriate referrals. However, inadequate training, productivity pressures, and payment and regulatory barriers stand in the way of fully integrated team-based care. To promote team-based care, the NASEM report suggests that “pediatric professional societies should collaboratively develop and implement testing, management, and referral guidelines that clarify when to consult, when to co-manage, and appropriate follow-up roles. Payers should adequately reimburse evidence-based delivery models that improve team-based care, including e-consults, telehealth visits, and integrated care teams.
Additional Resources
Legislative Briefing – Pediatric Subspecialty Physician Workforce
Infographic: CSCC Access Survey Results (2022) – CA Children Need Access to Pediatric Subspecialists
Access to Care in California – The CYSHCN Family Experience
Low Compensation for Academic Pediatric Medical Specialists: Role of Medicaid, Productivity, Work Hours, and Sex, Satyan Lakshminrusimha MD, Susan Murin MD, MSc, MBA, David A. Lubarsky MD, MBA