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. California Health Report, a YES! publication partner, 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.

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, says 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, says 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 for reduced-cost electricity.

The system isn’t perfect—the hospital is contracting with several managed care plans that all have different administrative requirements, Patel says. 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 says.

Read the full article about childcare for children with disabilities by Claudia Boyd-Barrett at YES!Magazine .