CHCF Report: Better Data Collection for HCBS Use is Key to Addressing Program Disparities – Status of Reform


This month, the California Health Care Foundation (CHCF) released a research report titled “Using Data For Good: Towards Fairer Home and Community 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 help policymakers and state stakeholders ensure the High quality collection and reporting of HCBS data as a 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) offering a Gap analysis and multi-year roadmap (“Gap analysis”) is expected to be launched in 2022 to assess gaps in the HCBS and Managed Long-Term Services and Supports (MLTSS) programs. California has also committed $ 4.6 billion to HCBS in its partially approved HCBS expenditure plan, as well as other initiatives through the Aging Master Plan (MPA) and CalAIM.

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

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

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

“Although much progress has been made in improving institutional frameworks and eliminating [discriminatory] By making the HCBS more accessible, the historical roots of discrimination remain structurally anchored in the HCBS and the long-term care infrastructure. Data is essential for measuring and addressing structural ableism, ageism, racism and other forms of discrimination that can cause inequalities in access to HCBS.

The first problem identified in the report is that demographic data is not systematically collected and reported in Medi-Cal. Demographic data published on HCBS programs remains extremely limited, with many programs failing to report the race, ethnicity, gender, age, language spoken or disability status of beneficiaries. Even in programs that have stronger demographics, such as the Home Support Services Program (IHSS), the data cannot be filtered by demographic category.

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

“Little is known about how HCBS providers, Medi-Cal managed care plans, or state departments consistently and thoroughly research demographic information from HCBS beneficiaries. Staff may be uncomfortable or not trained to solicit sensitive information, or they may not provide enough context to HCBS users as to 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 available to certain populations in the state.

“These variations contribute to the challenges the state faces in collecting and reporting consistent and comprehensive HCBS data that also measures program-specific access and use.”

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

As a result, the data that state departments require HCBS providers to collect varies, the data that state departments publicly report varies, the frequency with which departments publicly report the data (e.g., monthly, quarterly , annually) is inconsistent and data is difficult to locate even when departments make it publicly available. The lack of a single State Department Responsible for the collection, reporting and coordination of HCBS data, it is more difficult for HCBS programs to be included in the state’s larger data efforts.

The report noted that the HCBS programs have so far not been required by the CalHHS data exchange framework initiative under development.

Another challenge identified by the CHCF was that Medi-Cal HCBS is paid and delivered through fee-for-service and managed care plans, resulting in variations and complexities that present challenges for collection and delivery. data communication. For example, California has not reported data on its institutional care spending versus HCBS spending to CMS since 2014 – data the report says CMS typically collects from states each year.

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

The final issue identified in the report is the variation in how HCBS programs determine eligibility, as different entities and assessment tools perform the functional assessment of eligibility in each HCBS program.

“… data to assess bias in eligibility determinations is largely unavailable, including data on the time to approval of applications and the rates of approvals, denials, appeals and of grievances. “

The recommendations included in the report to resolve each of the identified issues are listed below:

  • “Establish robust and transparent standards for the collection and reporting of HCBS data”
    • The CHCF recommends establishing a consistent set of demographic data points and access / use metrics to be collected and reported across all HCBS and long-term care programs.
    • Applicant, user, and vendor data should be able to be filtered by more than one demographic so that 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 Service and Support Transparency Dashboard (LTSS) and MPA Data Dashboard.
  • “Addressing administrative and infrastructure barriers to data collection and reporting”
    • The CHCF recommends the establishment of a specific working group on HCBS to develop and implement data standards and coordinate with other government departments responsible for HCBS data.
    • The foundation recommends involving HCBS stakeholders in developing data reporting and collection standards and measures to improve data accuracy.
    • The state should also develop strategies and policies to address the disparities identified in the HCBS.
  • “Use the data to make comparisons and develop strategies to address disparities”
    • The CHCF recommends establishing baseline data to compare access and use of the HCBS program among populations and setting improvement targets, as well as conducting statistical analyzes to identify significant differences in HCBS data.


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