Susan Skotzke had high hopes when she heard about a new benefit called Enhanced Care Management offered under her daughter’s Medi-Cal health insurance plan.

Skotzke, who lives in Santa Cruz County, spends between five and 10 hours a day coordinating care for her daughter, Diana, who has a rare genertic condition and seizure disorder, and is unable to walk, talk or feed herself. The new benefit, known as ECM, is designed to help children like Diana and their caregivers get access to the services they need by assigning them a lead care manager to do coordination work.  Stotzke had a list of things she needed help with: Finding Diana a good wheelchair clinic, negotiating with the Regional Center to get back a beloved in-home nurse they’d lost due to a contracting rule change, and obtaining financial assistance for an emergency power system to keep Diana’s medical equipment running during power outages.  

“I was so excited, I thought it was really going to be great,” said Skotzke, who first learned about Enhcanced Care Management because she sits on a state advisory board for California Children’s Services, a program serving children with special health care needs. “I was hoping to get some real help for something to make a difference for our daughter, to really help her.”

The number of children enrolled in Enhanced Care Management has almost doubled since California officially launched the benefit in July 2023 to people under age 21 enrolled in California Medi-Cal managed care plans. In the last two quarters of 2023, the number of young people enrolled grew from 6,437 to 12,077, according to the latest data released by California’s Department of Health Care Services, which oversees Medi-Cal, California’s health insurance program for low-income houseolds and people with disabilities. Health plans and state health officials say the growth is a sign that the benefit rollout is going well. 

But some advocates and parents remain concerned about the benefits’ reach and effectiveness. 

Enhanced Care Management, also called by its initials ECM, offers children and their caregivers a lead care manager tasked with overseeing all of a child’s health care and related services that support their well-being. These can include organizing and coordinating medical, dental and mental health apoitnments, obtaining medical equipment or special support at school, and helping their families enroll in social services such as subsidized housing or food programs. It’s available to children with complex physical, behavioral and social needs, including kids with serious medical and mental health conditions, and young people who are homeless, pregnant, in foster care or leaving the juvenile justice system. 

While enrollment has grown, many thousands more children are likely eligible for the benefit. Rollout has been bumpy, with some potential ECM providers reluctant to sign up to offer the service because of its complexity, confusion about what the benefit is and how it’s supposed to work, lack of public awareness about the program, and reports of inadequate service from some parents whose children have received ECM. 

The Department of Health Care Services is implementing some changes to streamline the program and make it easier for providers to participate. Recommendations for further improvement include a more robust messaging campaign from the state to educate local authorities and providers about ECM, better tailoring of the benefit to children’s needs, ensuring managed care plans have enough qualified providers to offer the benefit, and approving kids for ECM more quickly. 

“I’m optimistic about what the benefit can provide,” said Mike Odeh, senior director of health at the Children’s Advocacy organization Children Now, which has been evaluating the rollout of the benefit and recently issued a report. “I have a lot of questions about quality, and I would like to see the state make some adjustments and modifications that are really strategically focused on kids.”

Enrollment numbers are low, especially for foster youth

Odeh said he believes enrollment in the program should be higher, especially among certain groups of children and youth, such as foster youth and children with special health care needs. For example, as of Dec. 2023, there were 1,212 children and youth in the child welfare system receiving Enhanced Care Management. Yet California’s child welfare system serves on average almost 100,000 children in any given month. Meanwhile, out of approximately 207,000 enrolled in California’s Children’s Services program, which serves kids with certain complex or life-thretening health problems, just 1,250 were receiving ECM in the final quarter of 2023. CCS children are eligible for ECM if they have needs that go beyond the scope of the program.

“We know the kids in CCS, we know the kids in child welfare. These are not hard-to-find populations,” Odeh said. “I’m not impressed by these numbers, to be honest.” 

Anthony Cava, a spokesman for the Department of Health Care Services, said the agency is working to improve ECM enrollment of children and youth in child welfare. In an email, he said some youth are also not eleigible for the benefit because they receive a type of Medi-Cal called fee-for-service, which is not handled by managed care plans. He said the agency has also assigned a liason to work with managed care plans and ECM providers to help them identify, enroll and serve foster youth.  

Odeh said he’s also concerned that Medi-Cal managed care organizations, which administer Medi-Cal at the local level and are in charge of implementing ECM by contracting with providers and enrolling eligible plan members, don’t yet have enough providers in their networks that can offer the kind of specialized and culturally appropriate case management services the benefit is supposed to provide. He said his organization, which is conducting an evaluation of the benefit, has heard of families not receiving adequate support, being sent to providers who don’t speak their language or don’t have necessary expertise, waiting weeks to get connected with a case manager, and giving up on the program because they don’t find it helpful.

Linnea Koopmans, CEO of Local Health Plans of California, a statewide trade association representing California’s 17 Medi-Cal managed care plans, said she thinks the growth in enrollment numbers is encouraging and shows that the benefit’s rollout is on the right track. She expects subsequent data releases will show continued enrollment increases.

Nevertheless, the benefit is still new and challenges remain. One is that many ECM providers contracting with health plans are small, community-based organizations that have not contracted with Medi-Cal before. It takes time for them to build up the capacity and infrastructure to do this, Koopmans explained. 

Another challenge is getting the word out about ECM and helping providers and patients understand the benefit and how its different from other types of case management, Koopmans said. For example, some children already have case managers for specific aspects of their care. ECM lead case managers are supposed to be like air traffic controllers overlooking the entire picture of a child’s care, providing direction to other case managers and providers in a child’s life and making sure everything is running smoothly.  Communicating that concept has been difficult, she noted. 

A solution would be for the Department of Health Care Services to come up with a centralized messaging campaign to educate other state partners that work with children about ECM, such as the child welfare, education and juvenile justice systems. Those agencies could then help spread that messaging among local entities to increase awareness and understanding, Koopmans suggested. 

Is it helping?

ECM is designed to improve access to comprehensive care for California’s neediest children and ease the burden on parents or caregivers, some of whom spend hours each week managing their child’s care. Coordinating care is especially challenging given the complexity and siloed nature of the state’s health, education, juvenile justice and social services systems, where different agencies often don’t communicate with each other even though they’re serving the same child. Many families also don’t realize what services are available for their children, don’t have the capacity to navigate the different systems, or struggle to find providers. 

Skotzke enrolled her daughter in Enhanced Care Management at the recommendation of her daughter’s health plan. Diana had recently turned 21, and lost access to a program that also provided care coordination called the Whole Child Model. Skotze and her daughter were assigned to a lead care manager at a local community organization.   

From the beginning, Skotzke said she was disappointed. The ECM provider seemed to know nothing about how the children’s disability services system worked. The mom said her provider made three visits to their house, asked her to fill out paperwork and retell her story multiple times. But help never came. She ended up filing a grievance with the state and dropping the benefit. 

“It was just two people delivering paperwork telling me ‘we’ll come back to get the paperwork,” she said. “They weren’t helping me so it was more stress than help. It was so frustrating.”

Cava said the agency does not know how many people have filed grivances about ECM. He said the grievances go through the managed care plans first, which are then required to report them to the department. Cava said the agency will make the data available to the public once it has it. 

But Koopmans said she’s heard from health plans about the benefit making a huge difference for some children and young people. In one case, a young adult leaving the juvenile justice system was connected with mental health treatment, job training and received help finding housing. Another ECM provider helped ensure a foster youth placed in a residential treatment facility in a different county was able to retain their health benefits and care coordination. And a child placed with a foster family got an appointment for an autism assessment and was connected with behavioral health services within three days of the family requesting help from their ECM provider, she said. 

These stories show “our systems connecting in a way that serves members best and also ECM being a responsive model that’s focused on the highest needs population, but much more broadly than just the medical needs,” Koopmans said.

Ann-Louise Kuhns, president and CEO of the California Children’s Hospital Association, which represents California’s eight freestanding children’s hospitals, said she’s also heard about ECM benefitting patients.

“From what I’ve heard from our members, the benefit itself can be really transformational for families,” she said. “It can be incredibly helpful for families that are struggling to find food, to find housing. It can be really effective at connecting families to services and making sure that they have the services and the supports that they need.”

Providers on the sidelines

Some organizations that would likely qualify as ECM providers are staying out of the fray for now. Lynn Kersey is executive director of Maternal and Child Health Access in Los Angeles, which serves pregnant people and young children, including many with complex needs. 

She said the application process for ECM funding is daunting and would require hiring a consultant or dedicating significant staff time to complete it. She’s also waiting for some of the kinks in the program to get worked out before she applies. 

Additionally, Kersey said she has concerns about working with managed care organizations, which in her experience have not been reliable partners in supporting her organization’s clients with complex health care needs in the past. 

Meanwhile, Kuhns with the California Children’s Hospital Association said a majority of children’s hospitals have also held back from offering the benefit because of the time and resources it would take to implement, concerns about administrative complexity, and because not all health plans want to contract with them. That’s despite the fact that children’s hospitals serve many children who meet ECM criteria. She said DHCS efforts to create standardized forms for ECM providers and reduce authorization hurdles could help in the long-run.

Children Now, meanwhile, released a report on ECM in late October with recommendations for managed care plans and the state. The report asks the Department of Health Care Services to better oversee the new benefit, including by tracking referrals to make sure they happen quickly and developing guidance to ensure adequacy and quality control of providers.

“I don’t think the way the policy has been written and rolled out is thoughtful enough from a kid’s perspective,” Odeh said. “I’m hopeful that we can identify what those best improvements and solutions are.”