CHCF report: Better data collection for HCBS usage is critical to addressing disparities in the program


Soraya Marashi


This month, the California Health Care Foundation (CHCF) published a research report titled “Using Data for Good: Toward More Equitable Home and Community-Based Services in Medi-Cal.” The report focuses on Medi-Cal Home and Community-Based Services (HCBS) and Medi-Cal-funded long-term care, and intends to support state policymakers and stakeholders in ensuring the high-quality collection and reporting of HCBS data as the state launches various efforts to improve HCBS services.


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The state has already made efforts to improve HCBS data with the California Department of Health Care Services (DHCS) proposing a Gap Analysis and Multi-Year Roadmap (“Gap Analysis”) set to launch in 2022 to assess gaps in HCBS and Managed Long-Term Services and Supports (MLTSS) programs. California has also committed $4.6 billion to HCBS in its partially-approved HCBS spending plan, as well as other initiatives through the Master Plan for Aging (MPA) and CalAIM.

The report acknowledges that while there is a wide array of HCBS in California, as well as significant Medi-Cal funding for them, public data demonstrating whether HCBS are equitably available and used by those who qualify for services is limited. 

The report identifies gaps in existing HCBS program data and the challenges with the current HCBS data collection infrastructure, as well as recommendations to address these problem areas.

The authors maintain that data measuring equitable access is especially important for Medi-Cal’s HCBS programs.

“While much progress has been made toward improving institutional settings and eliminating [discriminatory] bias by making HCBS more available, the historical roots of discrimination remain embedded structurally in HCBS and the long-term care infrastructure. Data are critical to measure and address structural ableism, ageism, racism, and other forms of discrimination that may be causing inequities in access to HCBS.”

The first problem identified in the report is that demographic data isn’t consistently collected and reported in Medi-Cal. Publicly reported demographic data on HCBS programs remains extremely limited, with many programs failing to report race, ethnicity, gender, age, language spoken, or disability status of recipients. Even in programs that have more robust demographic data available, such as the In-Home Supportive Services (IHSS) program, the data cannot be filtered by demographic category. 

The report also notes that while many demographic data elements are obtained during the Medi-Cal application process, it is not clear how this data is linked to HCBS programs. 

“Little is known about how consistently and thoroughly HCBS providers, Medi-Cal managed care plans, or state departments seek demographic information from HCBS recipients. Staff may be uncomfortable or untrained in soliciting sensitive information, or they may not provide enough context to HCBS users to explain why such questions are asked or their importance.”

Another challenge identified in the report is the complex structure of Medi-Cal HCBS programs. California has used the Medicaid State Plan, Medicaid waivers, and demonstration programs to offer HCBS, resulting in a “patchwork” of HCBS programs that are only accessible to certain populations in the state.

“These variations contribute to the challenges the state faces in collecting and reporting uniform and comprehensive HCBS data that also measure access and utilization specific to each program.”

Another problem identified was that HCBS and long-term care programs are overseen by multiple and overlapping state and county government agencies and departments. 

“As a result, the data that state departments require HCBS providers to collect vary, the data state departments publicly report vary, how often departments publicly report data (e.g., monthly, quarterly, annually) is not consistent, and data are difficult to locate even when departments make them publicly available. The lack of a single state department responsible for HCBS data collection, reporting, and coordination makes it harder for HCBS programs to be included in the state’s broader data efforts.”

The report noted that HCBS programs have so far not been required by the CalHHS data exchange framework initiative that is currently being developed. 

Another challenge identified by CHCF was that Medi-Cal HCBS are paid for and delivered through both fee-for-service and managed care plans, resulting in variations and complexities that present challenges for data collection and reporting. For example, California has not reported data on their institutional care expenditures versus HCBS expenditures to CMS since 2014–data the report says CMS usually collects from states every year. 

“Without such data, it is impossible to determine the extent to which California is rebalancing the provision of services from institutional settings to home and community-based settings.”

The last problem identified in the report is the variation in how HCBS programs determine eligibility, as different entities and assessment tools conduct the functional assessment for eligibility in each HCBS program. 

“ … data to assess for biases in eligibility determinations are largely unavailable, including data on application approval time and rates of approvals, denials, appeals, and grievances.”

Recommendations included in the report to address each of the problem areas identified are listed below:

  • “Establish Robust and Transparent Standards for HCBS Data Collection and Reporting”
    • CHCF recommends establishing a uniform set of demographic data points and access/utilization measures to be collected and reported across all HCBS and long-term care programs. 
    • Data on applicants, users, and providers should be able to be filtered by more than one demographic element so it can be analyzed intersectionally, and the frequency of data collection and reporting across all HCBS programs should be standardized. 
    • This data should all be displayed publicly in the Long-Term Services and Supports (LTSS) Transparency Dashboard and the MPA Data Dashboard.
  • “Address Administrative and Infrastructure Barriers to Data Collection and Reporting”
    • CHCF recommends the creation of a specific HCBS task force in charge of developing and implementing data standards and coordinating with other state departments responsible for HCBS data. 
    • The foundation recommends engaging HCBSstakeholders in developing data reporting and collection standards and measures to improve data accuracy. 
    • The state should also develop strategies and policies to address disparities identified in HCBS.
  • “Use Data to Make Comparisons and Inform Strategies to Address Disparities”
    • CHCF recommends establishing data benchmarks to compare HCBS program access and utilization among populations and set improvement goals, as well as conducting statistical analyses to identify meaningful differences in HCBS data.