It was a typical week for Nancy Netherland of Berkeley. 

Her 15-year-old daughter, Amelia, who has a rare autoinflammatory disease that causes multiple chronic physical and developmental health problems, needed a new course of treatment involving genetic testing and immune-system medication.

The recommendation came from Amelia’s immunology team at UCSF Benioff Children’s Hospital. But there were seven other doctors who regularly work with Amelia that needed to know about this change too. So did Amelia’s private therapist, her family therapist and the school psychologist. Getting the new treatment also required filling out medical paperwork, obtaining coverage authorization from Amelia’s health insurance program, and sharing information with other officials at Amelia’s school. 

This entire job fell to Netherland, a single mother who also has another child with complex medical needs. Altogether, Netherland estimates she spends up to 15 hours a week just coordinating her children’s care. 

“There’s no one else to do it, so it’s me,” said Netherland, who also works from home as a health policy consultant. “I end up working late at night because I have to do all (the care coordination) between work hours. I would so love to have that time back to be a mom.”

A new benefit called Enhanced Care Management offered under California’s Medi-Cal program could help Netherland and other parents who are caring for children with complex physical, behavioral and social needs. These include kids with serious medical and mental health conditions, and young people who are homeless, pregnant, in foster care or leaving the juvenile justice system. Children and teens who qualify for the benefit are assigned a lead care manager to take charge of coordinating all of their health care and related services such as dental care, obtaining medical equipment and access to developmental programs. The manager’s role is to keep track of the various providers, agencies and programs a child is involved with and that often don’t communicate with each other, and to connect families to other services they may need.

However, the program — which launched July 1 — has been slow to help most families who qualify, including the Netherlands, who are still waiting to enroll. 

“It kind of feels like no one was quite ready for it to launch, but it launched anyway,” said Mike Odeh, senior director of health at the children’s advocacy organization Children Now. “I want to be really optimistic about it, but it does make me wonder, if it can’t be done well, should we be doing it right now?’”

Advocates for children with disabilities are asking California to provide more information about the new benefit and how the rollout is progressing. For the program to succeed they said the state must ensure there are enough lead care managers with sufficient training to do the complicated work of managing care for high-needs children. And they urged greater transparency and speed in data collection.   

Removing structural barriers

As of mid-August, the California Department of Health Care Services, which oversees the new benefit, had not widely publicized its availability, and only about 3,000 of the estimated 175,000 to 292,000 California children expected to qualify for the program were enrolled. When questioned, the agency said there is no specific enrollment target right now because the agency is waiting to gauge demand for the program. Agencies participating in the benefit’s rollout, including some county health departments and Medi-Cal managed care plans, said the program was still in the early stages of development. 

The program will be a part of Medi-Cal, the state’s health program for those who qualify based on income or certain health conditions, which more than a third of Californians are enrolled in. Medi-Cal managed care plans can contract with county agencies, health care providers and community-based organizations to provide the coordination. 

In an email, Health Care Services spokesman Anthony Cava said it will take time to successfully implement Enhanced Care Management and other changes to the Medi-Cal program that are part of a transformative effort known as CalAIM. The department is using feedback and data to tweak these changes as they roll out, he said, noting that the process would be a “multiyear journey.”

“We know that as the benefit rolls out, additional refinements must occur,” Cava said.

Meanwhile, parents like Netherland wait.

She’s received no information from her children’s health insurance plans about the new benefit, and her children’s health providers don’t seem to be aware of it. Netherland only knows about the program because, in addition to being a mom and caregiver, she’s an advocate for children with health care needs and has served as a parent representative on state panels on the topic. 

Coordinating doctor appointments and medication details is just one aspect of Netherland’s responsibilities when it comes to caring for Amelia and her older sibling, Sarah. She also spends hours driving them to specialists, including behavioral health clinicians, occupational therapists and physical therapists. She also takes Amelia to infusion therapy at the hospital. She chases down prescriptions, meets with school staff to discuss individualized education plans, oversees tutoring, helps with homework, takes Amelia to equine therapy and drives Sarah to a job training program.  

“At the end of the day these young people who live with illnesses … they’re just kids,” Netherland said.  “I feel like one of the things ECM might do is it might help remove some of the structural barriers that get in the way of young people (getting the support they need) so their families can just enjoy more time being resourced.” 

Cava said the state health care agency doesn’t have up-to-date information on how many children have enrolled so far. The department estimates that between 3 percent and 5 percent of the 5.8 million youth under age 21 enrolled in Medi-Cal will be eligible. Approximately 3,270 children and teens received Enhanced Care Management services in 2022 as part of an earlier rollout targeting adults, typically because those children were enrolled along with an older family member or were grandfathered in through a previous program, Cava said. The department reviewed all the Medi-Cal managed care plans in the state prior to the July 1 launch of the benefit for children and youth to make sure they had the right procedures in place and enough providers to offer ECM. The department concluded they were ready for the launch, he wrote. 

Managed care plans are responsible for identifying eligible children and referring them to providers for service. He said the department has also instructed managed care plans to work on increasing awareness of the Enhanced Care Management benefit among their plan members and entities that serve those who may be eligible such as schools, medical offices and community-based organizations. 

Meanwhile, Nicole Kasabian Evans, a spokesperson for Local Health Plans of California, a statewide association representing California’s Medi-Cal managed care plans, said she did not have any information she could share on the record. Austin Wingate, public information manager for the Alameda County Public Health Department, said officials there had not yet fully implemented the program and could not provide specific information for several more weeks. Inez Leonard, administrator of the Sacramento County California Children’s Services program, which serves children with disabilities, said her agency planned to participate in offering the benefit, but was still in the planning stages. 

Fewer children in foster care?

Some organizations have begun offering the benefit on a limited scale or plan to begin offering it soon. Children’s Hospital Los Angeles began enrolling children in Enhanced Care Management July 1, said spokesperson Lauren Song in an email. Craig A. Vincent-Jones, deputy director of Children’s Medical Services at the Los Angeles County Department of Public Health, said his division had applied for funding through the California Department of Health Care Services which, if approved, would allow them to begin offering Enhanced Care Management for children and youth in early to mid 2024. He anticipated enrolling 1,000 children in the first year. 

Vincent-Jones said the program could potentially lead to fewer children entering the foster care system by improving support for struggling families. “A health condition can unravel a family and sometimes that’s what leads to them being in the child welfare system, so if we can find ways of preventing that, hopefully we can reduce the number of kids and families” in the child welfare system. 

The California Alliance of Child and Family Services is further along in the implementation process. The statewide organization represents 160 agencies that primarily serve low-income and challenged youth and their families. The Alliance launched an Enhanced Care Management provider network last October that includes almost 50 of its members. Called the Full Circle Health Network, it has already contracted with two Medi-Cal managed care plans to deliver the benefit, and as of July, 24 families had been referred for care, said Camille Schraeder, the network’s executive director.

The network has developed an electronic records system that providers can use to manage patient information and referrals, and will collect standardized data on behalf of the health plans to assess program reach and quality.

“It’s a wonderful opportunity to see if we can actually effect change,” Schraeder said.

Odeh with Children Now was less convinced about Enhanced Care Management’s chances of success. He said too many questions remain about who will provide the lead care coordination and whether they’ll have the expertise and relationships needed to successfully do the job. In May, Children Now commissioned a series of focus groups with parents of children with chronic medical conditions. The organization found that few parents knew about the new benefit, and while some hoped it could help, others worried it might add yet another layer of complication to their child’s already complex care needs.

That’s how Netherland feels about it. Although she calls herself a “diehard fan” of the Enhanced Care Management concept, she said she’s worried she’ll end up having to teach the lead care manager herself how to coordinate Amelia and Sarah’s care. So far, that’s been her experience with other case managers and similar workers assigned to help her family.  

“I just have questions about how effective it’s going to be,” she said. “And I don’t mean to be a rain-on-the-parade person, because I really hope it works.” 

Both Odeh and Netherland said they’d like the Department of Health Care Services to collect and make public data that shows in real time how the benefit is working. The Department is currently planning to collect data on the program quarterly. The first reports are due in November, Cava said. 

And children’s advocates said the state should get input from families, including people who often face barriers to accessing health care benefits, such as people of color, those with limited English proficiency, and families impacted by the child welfare system. Odeh said he’d also like the agency to do more to build up the needed network of skilled lead care managers.    

Netherland dreams of the Enhanced Care Management program being fully operational, and what that would mean for her and her children. She envisions a care manager who can schedule her children’s appointments at convenient times instead of the haphazard appointment slots they currently get; haggle with insurance when coverage for life-enhancing procedures gets denied; and convene meetings with her children’s providers so everyone is on the same page about their needs and treatment. Perhaps, if someone did this for her, Netherland could even find time to take care of herself for a change. She’d like to go back to training for marathons, which she did before she had children.

“I would love to see what it’s like to be a caregiver and not a care-wrangler,” she said.