California Children’s Services (CCS) is a critical state program for children up to age twenty-one with certain diseases or complex health conditions. In 2022, the National Health Law Program (NHeLP) conducted a family engagement survey in English and Spanish.[1] The survey aimed to hear from the parents and caregivers of CCS beneficiaries about their experience navigating the CCS program. Specifically, the survey focused on CCS notices, hearings and appeals, with the goal of developing recommendations to improve the CCS appeals process. This survey was shared through the NHeLP listerv, the Family Voices of California network, and the Lucile Packard Foundation for Children’s Health newsletter. We received eighty-five English-speaking responses and twenty Spanish-speaking responses to our survey.
Families Continue to Be Unclear About Their Rights When Their Child Receives a CCS Denial
Sixteen English respondents indicated that their child was denied a CCS service. Some of the denied services included medical equipment (like a wheelchair or incontinence supplies), home nursing care, medical tests, and occupational or physical therapy. Sixteen respondents noted that they paid out of pocket for a CCS covered service because it was denied. Some respondents indicated that they paid out of pocket because they did not know that the services should have been covered, while others paid out of pocket because approval timelines were too long. In some cases, families were unaware that their Medi-Cal would cover medically necessary services denied by CCS. As seventy percent of CCS-eligible children are also Medi-Cal eligible, this is a key right families may be missing.
Of the twenty Spanish-speaking respondents, only two indicated that they had been denied a service through CCS. Three respondents noted that they paid out of pocket for a denied service. One described paying for occupational therapy out of pocket, and another described their debt from paying $1,000 out of pocket. Only two respondents knew that they could ask Medi-Cal to cover a service that was denied by CCS. Only one respondent stated that they requested Medi-Cal cover a service denied by CCS.
These survey results suggest a need for improved communication and notices between the CCS program and CCS beneficiaries and their caregivers. Responses indicate caregivers lack the information they need to successfully utilize the CCS program. Although most of the respondents in both the English and Spanish survey indicate that their child is also enrolled in Medi-Cal, a large number were unaware of their right to request coverage for a denied service through Medi-Cal. CCS beneficiaries with Medi-Cal are not consistently informed about their Medi-Cal due process rights. The Department of Health Care Services (DHCS), which administers both programs, should do more to ensure that CCS families are aware of their rights under both programs.
The Appeals and State Fair Hearings Process Continues to be Difficult to Navigate
Families noted that the appeal process is convoluted, difficult to navigate, and lengthy. In particular, one respondent recounted that their child’s medical needs were more urgent than CCS’ appeal process timeline allowed for. That respondent noted that the payor dictates whether and when their child gets care even when it is counter to the medical team’s recommendations. Another respondent described that they only received a verbal denial but nothing in writing, which is a concern. Eight English-speaking respondents stated that they participated in a state fair hearing but their experiences varied. Some noted that the process was intimidating but they had a good outcome while others shared that the experience was overall positive. Of the Spanish-speaking survey respondents, only one indicated that they did file for a state fair hearing but did not participate in it.
Based on the feedback from respondents concerning their experiences, it appears children and their families are falling through the cracks of a system intended to support them. The feedback underscores the need for DHCS to provide more consistent and comprehensive information to the caregivers of CCS beneficiaries about the appeals, grievance, and state fair hearing process.
The Department Should Continue to Incorporate Recommended Improvements to the CCS Program From CCS Families
We asked parents and caretakers of CCS beneficiaries for their recommendations for improving CCS. Overall, respondents suggested the need for easier processes, quicker approvals and responses, less bureaucracy, more communication between the CCS Program and CCS families, more service providers and case management to meet their needs, improved coordination of care between CCS and Medi-Cal, and improved knowledge management of the CCS program, offices, and personnel.
Notably, one recommendation was to make clear that CCS does not require a child’s condition to continuously improve, but instead treatment can and should focus on maintaining the child’s condition so it does not get worse. One caretaker noted, their child was reduced and then dropped from CCS therapies because their child’s progress was considered to be too slow. Another who experienced a reduction in physical therapy and occupational therapy noted that “many disabilities are about maintaining and improvements are not physically possible.” Family feedback is consistent with federal Medicaid Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) requirements that requires states to cover treatment that “corrects or ameliorates” a medical condition, and that includes services needed to keep a child’s condition from getting worse.
Another recommendation was for the state to require regular family education on the scope of the benefits in the CCS program and to help families and caregivers understand how the CCS program fits with Medi-Cal and private insurance. Several families noted that they had difficulty understanding or finding information about the CCS program while also being overwhelmed with managing their child’s health condition. Respondents also suggested an orientation as to what CCS covers and overview of the appeals process.
Finally, respondents suggested more timely authorization of services and more easy access to real-time information. One respondent shared: “I wish that we didn’t have to use hospital admissions as a strategy to get timely authorization of needed care and diagnostics. The fight between CCS and Medi-Cal over who will cover is frustratingly long.”
NHeLP’s Recommendations From the Survey Findings
While parents and caretakers provided important feedback on their experiences with the CCS program, they also noted that the program has been very helpful. The survey results illustrate that while the CCS program is a critical program to provide care for children with complex health needs, there are necessary improvements to actualize the rights of CCS beneficiaries. Two key recommendations are:
- Improving communication and notices between CCS and Medi-Cal for those children enrolled in both programs to ensure that caregivers are aware of, and able to exercise, their child’s rights in the CCS program.
- DHCS and CCS providing better written information to family members and caregivers on the CCS program to help improve the efficacy of the program and ease the burden parents and caregivers face navigating the CCS and Medi-Cal system while caring for a child with complex health needs.
Parents and caregivers have lived experience with these programs that makes them experts. Seeking feedback from those who have this experience will inevitably help improve the program. NHeLP will continue to engage families and caretakers of CCS beneficiaries to guide our work.
[1] Funded by a grant from the Lucile Packard Foundation for Children’s Health, Palo Alto, California
