Vivian Vasquez, the mother of Claire, a 3 year old with a rare genetic condition, shows the stack of folders she uses to try to keep track of paperwork related to her daughter’s medical care. Photos by Zaydee Sanchez.

California has a variety of programs aimed at supporting the health care needs of children with complex disabilities. But accessing and utilizing these programs is complicated and time consuming for families, many of whom are already under stress because they are caring for a child with intensive medical needs. The California Health Report spoke with several experts and disability advocates about what can be done to ease the burden on families and ensure children with disabilities get the care they’re entitled to.

Care coordination

Health care organizations such as hospitals, clinics and managed care plans, need to provide families of children with intensive medical needs with comprehensive care coordination that includes not just medical care but also social services, said Mona Patel, a pediatrician and chief integrated delivery systems officer at Children’s Hospital Los Angeles. That means going beyond just providing a list of resources and leaving caregivers to figure out the next steps. Families need personalized and well-organized support to connect them with resources in their community and help them navigate the challenges that come up.

Anna Leach-Proffer, managing attorney with Disability Rights California, said many programs such as Regional Centers and California Children’s Services do provide case managers for families of children with special health care needs. But this often results in families having multiple case managers who only work within one program and don’t coordinate among themselves. What’s needed is a super-coordinator who can oversee all aspects of a child’s care across all the programs.

A new benefit launched in July called Enhanced Care Management (ECM) aims to provide this for low-income children enrolled in Medi-Cal who have complex medical and social needs. However, the benefit has been slow to roll out and there is skepticism about whether it will be effective, including fears that it will simply add another layer of complication to the health care system for families.

Children’s Hospital Los Angeles is one of a few organizations already offering the benefit at scale. The hospital has hired 10 community health workers and provided ECM navigation to almost 300 families of medically fragile children since July. The workers meet with the families at clinics or in the community and walk them through obtaining the health and social services support they need, often going with them in person to apply. This could range from getting a mental health appointment to an application for subsidized housing or to for reduced-cost electricity.  

The system isn’t perfect – the hospital is contracting with several managed care plans which all have different administrative requirements, Patel said. She said it would help if the state Department of Health Care Services would standardize requirements across health plans. This needs to include standards designed for children, not just the adult population.

Nevertheless, families and medical providers working with the hospital’s program have so far offered positive feedback, she said.

“I think it could become the way of the future if it becomes much more streamlined,” Patel said, adding that the program could be “a wonderful opportunity to deliver the care and the depth of care that our patients and families deserve, especially in our vulnerable communities.”

Elizabeth Zirker, senior counsel for Disability Rights California, said managed care plans must also pay ECM providers adequately to ensure enough of them want to do the work. Another challenge with the care program is that it’s not available to children who qualify for Medi-Cal through a waiver program that exempts them from income eligibility limits. It would make sense to change if those children aren’t receiving specific ECM-type services elsewhere, such as help transitioning out of an institution and coordination and referral to community and social supports, she said. 

Vasquez holds Claire at their home in East Los Angeles.

Closed referral loops

In 2025, Medi-Cal Managed Care Plans will be required to make sure that when members – including children and their families – are referred to a health or social service provider, someone follows up to make sure that referral went through. This “closed loop referral” requirement encompasses referrals to ECM coordinators, local community organizations, dentists, Regional Centers, nutrition programs and county mental health departments, among others.

Mike Odeh with the organization Children Now said, like ECM, this policy could really help families caring for children with disabilities, if done right. To ensure this, the state must fully detail what a “closed loop referral” looks like, such as a maximum time a referral should take to complete, and how they should be done. This is especially critical for young children for whom the speed of early intervention can have lifelong consequences. 

“There needs to be training and resources (for providers) to make these systems work,” Odeh said. “At the end of the day it can’t be just giving the family a phone number and saying good luck, hope it works for you.” 

Remove limits on HCBA waiver 

The Home and Community-Based Alternatives (HCBA) waiver provides children and adults with disabilities who would otherwise be institutionalized to receive the services they need to live at home, including home nursing care. But the program has been full since July, leaving thousands of people on a waitlist. Disability rights advocates and members of Congress have urged Gov. Gavin Newsom to increase the number of waiver slots. The state did recently add an additional 7,200 slots over the next four years and implemented “triage” protocols to prioritize medically fragile children in the intake process, after a California Health Report column and other coverage of the issue. However, Zirker with Disability Rights California, said the cap for medically fragile children should be lifted altogether. 

Automatic Medi-Cal reimbursement, better coordination with other plans

Some children with disabilities get health coverage from Medi-Cal and a statewide program called California Children’s Services (CCS). These programs don’t always agree on which entity should cover each service, and families get caught in the middle. If CCS denies a claim, Medi-Cal won’t pick it up until the family can prove it has exhausted the appeals process, said Leach-Proffer at Disability Rights California. That’s stressful and time consuming for families.

Leach-Proffer would like to see Medi-Cal coordinate with CCS to pay for denied claims, without families having jump through hoops. In fact, Zirkir believes that Medi-Cal should automatically pay all claims for its members so services can be provided in a timely fashion, and then figure out later if another program is responsible.

“Why should a medically fragile baby be placed at risk because these systems can’t communicate and are so lumbering?” she said. 

Claire sits in her high chair while her mother does the morning chores.

Enforce existing regulations 

Federal law requires Medi-Cal to cover all medically necessary services for children under age 21 who are enrolled in the program. These services include dental, vision, hearing, home nursing, nutrition and mental health services. But some California counties are not authorizing services according to these standards, said Nicholas Levenhagen, litigation counsel with Disability Rights California. He and Leach-Proffer said the Department of Health Care Services needs to provide better oversight of authorization processes among counties and Medi-Cal managed care plans.

Enroll all children in Medi-Cal

In October, the American Academy of Pediatrics — the largest professional association of pediatricians in the United States – proposed streamlining health care coverage for all children by automatically enrolling all newborns in a single, government-funded health insurance program. In California, this program would be Medi-Cal (a program that draws funding from two federal programs called Medicaid and the Children’s Health Insurance Program). The Academy proposed allowing all children to remain eligible for the program until they turn 26, regardless of income. Parents could choose to opt their child out of the program if they have another source of health insurance coverage.  

The Academy also proposed increasing federal funding to states to pay for this, and increasing provider minimum reimbursement rates to make sure Medicaid providers are paid on par with Medicare – the health insurance program for people 65 and older.

The existing patchwork of state Medicaid plans work well for some, but not all children, and leads to inequities and obstacles for families to obtain and keep their medical coverage,” said Jennifer Kusma, a co-author of proposal, in a statement.  “Ultimately, all of society benefits when children and families are thriving and able to get their routine, preventive and urgent health care needs addressed.”

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