Children with special health care needs in Los Angeles County should not be treated as “small adults,” according to pediatric specialists who see health care reform as a golden opportunity to design tailored systems of care for children with complex, chronic and rare health conditions.
“Professionals in health care in L.A. County, the state and nationally are working very hard to make the system work as we move toward reform,” said Thomas Klitzner, the Jack Skirball professor of pediatrics and director of the Pediatric Medical Home Program at Mattel Children’s Hospital UCLA.
“In L.A. County, as in the west, we have a more independent frontier culture with a small business orientation toward health care. However, to improve pediatric subspecialty care, we’re striving to pull together rather than competing with one another,” he said.
More than one million California children age 17 and younger have special health care needs, according to a new policy note from the UCLA Center for Health Policy Research. California has 1,700 pediatric subspecialists, or one for every 5,454 children age 17 and under, lower than the national average of one to 4,373, according to the report.
L.A. County is home to one-quarter to one-third of the state’s total population of children with chronic, complex conditions such as cancer, congenital heart disease, cerebral palsy, cystic fibrosis, birth defects, hemophilia or diabetes, Klitzner said.
Pediatric subspecialty care results in higher quality of care, improved outcomes and reduced costs, authors of theÂ policy paperÂ wrote. They cited several barriers to access to care in the state including a scarcity of pediatric subspecialists, gaps in care delivery, lack of care coordination and low reimbursement rates. The report noted that Medi-Cal reimbursement for pediatric services is an average of 54% of what Medicare pays for similar services for seniors. The report also noted that Medicaid reimbursement rates for pediatric services are much higher in many other states than they are in California.
California ranks at the bottom on two key health indicators. It’s 50thin the nation for the percentage of children with special health care needs — known as CSHCN — who have problems getting referrals for specialty care, said Ed Schor, medical director and senior vice president for programs at the Packard Foundation in Palo Alto. California ranks 46th among states for families who receive care coordination when they need it, he said.
The UCLA policy paper, funded by the Lucile Packard Foundation for Children’s Health, found that counties in four regions of the state — Northern California, Sierra Nevada, San Joaquin Valley and Central Coast — have the lowest supplies of pediatric subspecialists. Sacramento, Los Angeles and other Southern California counties have more providers, and the Bay Area has the most.
According to Daphna Gans, lead author of the study, pediatric subspecialties with the greatest shortages in California are:
- Child and adolescent psychiatry;
- Developmental/behavioral pediatrics;
- Neurology; and
- Adolescent health.
“L.A. County has less of a shortage than other areas of the state,” Gans said. “However, there really aren’t gold standards of what is considered a shortage — what should be the ideal ratio of pediatric subspecialists per numbers of children. Developing that standard remains an area of concern –we have it for adults’ physicians.”
Extensive — and expensive — training is required for a pediatric subspecialty: four years of medical school, three years of pediatrics, three years of training in the area of specialty, three to eight years of residency, then graduate-level training in the area of specialty and on-the-job training in a hospital before board certification. With formidable debt, the comparatively high cost of living in Los Angeles is another deterrent. Los Angeles, along with New York, is considered one of the two most expensive cities in the U.S.
“The average student owes between $250,000 and $300,000 after graduating from medical school,” said Nick Anas, president of the Children’s Subspecialty Care Coalition and pediatrician in chief at Children’s Hospital of Orange County.
Unsure About Insurance Â
Access to care, despite Los Angeles County’s moderate supply of pediatric subspecialists, remains a problem for many L.A. families.
“In some places in Los Angeles, relying on public transportation to get to a specialist could take hours. Then you need to find a doctor who takes payment from your coverage and also speaks your language,” Schor said.
Paying more for private insurance doesn’t open all doors for CSHCN families, however. “There’s a kind of trade-off between privately and publicly insured,” said Gans. “Privately insured may receive timely care, but private plans may not include pediatric subspecialists or may include a few. That’s when children are referred to a general subspecialist or adult subspecialist before a pediatric referral, and that delays care. Publicly insured are usually Â referred to a specialist no matter where they are, which can then mean longer delays and wait times,” Gans said.
Schor said pediatric coverage varies among private insurers.
“If you’re privately insured, you’ll get care where your managed care company has a contract,” Schor said. “Children’s hospital services tend to be more expensive than others might be and since pediatric subspecialists tend to be more expensive, the company may contract with another group of doctors who aren’t pediatric subspecialists. Maybe you’ll see an adult dermatologist, but your child won’t be as comfortable.”
Schor wonders about the more than 800,000 children transitioning out of Healthy Families, California’s Children’s Health Insurance Program, into managed care programs in Medi-Cal, its Medicaid program.
“The question is, ‘Will they have the same access to specialists?’ I don’t know. Kids who have a diagnosis in the California Children’s Services program get specialty care regardless of whether they were in Medi-Cal or Healthy Families,” he said.
Established in 1927 and considered a model for the nation, CCS is an organized delivery system for catastrophically and chronically ill children up to age 21. It is a partnership between counties and the state’s Department of Health Care Services.
Pilot Programs Take Off
“In Los Angeles and elsewhere, we need systems and reimbursement changes — and to take a fresh look at all of this,” Anas, the subspecialty coalition president, said.
In October 2011, state officials announced a redesign of CCS using regional pilot programs to curb continuously rising costs. The new plan called for moving children from fee-for-service to options more like managed care, such as enhanced primary care, case management, accountable care organizations and patient-centered medical homes, Gans said. Â
“California is being very thoughtful and careful about children with special health care needs,” she said.
The L.A. County pilot contract was awarded to L.A. Care Health Plan in collaboration with Mattel Children’s Hospital, Children’s Hospital of Los Angeles and Miller Children’s Hospital. Children’s Hospital of Orange County is also administering a pilot program.
“CCS is a fantastic organization that funds 50% of the kids we take care of in the children’s hospitals,” said Anas. “Remember that Medi-Cal insures well children, while CCS insures sick children. We need to understand the costs for any given patient and know how to assign an amount of money to care for them. We hope the government and state will be patient as we get data to them.”
“This is all a big task with so many moving targets,” said Klitzner. Mattel’s 12-year-old medical home is a model worth emulating, he suggested, and it adheres to American Academy of Pediatrics certifications of being accessible, culturally sensitive, continuous and family centered, as well as having a resident continuity clinic to teach future pediatricians. It addresses three specific tiers of patients:
- Tier 1: Well children who may have acute illness lasting up to six months;
- Tier 2: Children with a chronic disease lasting more than a year with the condition confined to a single organ system; and
- Tier 3: Complex cases and patients who are continually admitted and readmitted.
“The medical home approach is excellent for Tier 3, where the largest spending occurs by far. That tier represents 1% of the child population and as much as 30% of the total child health dollar,” Klitzner said. “Our medical home keeps children from falling through the cracks and cuts emergency room visits in this population in half. We have an opportunity to segment the pediatric population to achieve better value and efficiency,” he said.
Klitzner, along with Gans, Schor and Anas, hope the Affordable Care Act’s reliance on coordinated, patient-centered care, coupled with changes in reimbursement systems, will dovetail with efforts already underway to improve how California kids get specialty care.