Health care injustice for California’s high-needs children

California’s Plan To Absorb Medically Fragile Children Into Managed Care Proves Controversial

By Barbara Feder Ostrov and Anna Gorman
Kaiser Health News, August 17, 2015

When Kausha King’s son Christian was born with cerebral palsy, along with a seizure disorder and lung disease, doctors told her he would not live past the age of three. Today, Christian is 18, and although he cannot walk or speak, he is happy and thriving, King says.

King credits much of her son’s progress to a little-known state program known as California Children’s Services (CCS), which pays for specialized medical care for children with severe illnesses or birth defects.

Beginning next year, state officials essentially want to fold the $2 billion program, which serves an estimated 180,000 children younger than 21, into its vast system of Medi-Cal managed care.

But families like King’s, along with children’s advocates and pediatric medical centers, are strenuously opposed. They say Medi-Cal managed care hasn’t worked well for vulnerable populations and is particularly risky for fragile kids whose lives depend on access to highly specialized care.

“It feels like our children are going to be dumped in to this system that doesn’t even seem to be working for healthier children,” said King, who lives in Concord, Calif. and works as a liaison for families of children with special needs. “Children like Christian require a different level of support than your average child.”

At issue are two separate programs whose beneficiaries overlap. About 90 percent of children served by CCS also qualify for Medi-Cal, the public insurance program for low-income Californians. Medi-Cal covers their general medical care, while CCS covers services related to specific conditions such as spina bifida, cancer, cystic fibrosis and sickle cell disease.

CCS pays a fee for each service provided, whereas Medi-Cal increasingly is switching to a managed care approach, in which medical services are coordinated and covered under a single health plan for a fixed monthly payment.

Many parents and consumer advocates are skeptical. Similar transitions of elderly, disabled and child populations from traditional fee-for-service Medi-Cal into managed care programs have proved controversial.

These critics point to a scathing report from the California State Auditor in June, which found that the state could not assure that its Medi-Cal managed care networks were adequate and that thousands of calls to an ombudsman’s office went unanswered every month. They also refer to a lawsuit pending in Los Angeles, alleging disabled people were denied crucial medications, tests and treatment by Medi-Cal managed care plans.

(Ann-Louise Kuhns, president and CEO of the California Children’s Hospital Association) said the state’s proposal threatens children’s access to the pediatric specialists who are most familiar with them and their rare diseases.

“These (managed care) plans typically don’t have these specialty providers in their networks,” she said.



By Don McCanne, MD

The origins of California Children’s Services (CCS) (formerly Crippled Children’s Services) date back almost a century (1927). It has been a phenomenal program ensuring care for these children with special needs. Now the state wants to transfer these children into Medi-Cal managed care programs (Medicaid). Ouch!

CCS is part of the traditional culture of California health care. Children’s hospitals, academic institutions, specialists and sub-specialists are readily available to meet the needs of these unfortunate children, simply because it’s always been that way. Well, really more than that, because that is what they do. But no thought is ever given to turning these children away.

In contrast, Medi-Cal has been chronically underfunded and has one of the lowest payment rates in the nation. Many providers refuse to accept Medi-Cal patients (and they are “providers” when they let money issues trump their professional obligation to care for the infirm). Now it is even worse in that the Medi-Cal managed care organizations limit patient access to their own contracted networks. Experience to date suggests that these networks are inadequate for basic, primary care services, and access to more specialized services is much worse. 

California Department of Health Care Services director Jennifer Kent said that this is not about saving money, but rather that children can benefit by being managed in a system where the whole child is treated by one plan. But when the decision was made to transfer Medi-Cal patients to managed care programs it was about saving money, according to state announcements at that time.

CCS was all about getting the care that these children needed when they needed it. Medi-Cal managed care is about keeping patients away from “excessive” specialized care by coordinating their care through overworked primary care professionals who do not have the time nor expertise to meet many of the needs of these children with their complex disorders.

This should not to be construed as a statement condemning integrated health care. Just the opposite. Under a single payer system, our entire health care delivery system can be considered to be a single integrated system. Primary care provides an entry into a system in which the most appropriate care can be arranged - the best of integrated health care.

It was a wise move when the precursor of CCS was established early in the last century. It was a wise moved when they abandoned the label, “crippled.” It was a wise move when they perpetuated the program instead of folding it into California’s overworked and underfunded Medi-Cal program. But is was a terrible move when, for cost-saving reasons, they transferred Medi-Cal patients into managed care plans. Moving CCS patients into the same program is nothing short of tragic.

We need a single payer system so that we can get the bureaucrats and their private third party payers out of our way as we medically manage health care based on patient needs, rather than us managing health care dollars. Yes, we need public administrators to manage distribution of the funds, but we need to be free to advocate for our patients in a system designed to ensure access, not to prevent it.