Vivian is a 77 year-old Vietnamese woman who had a stroke a couple years ago and now resides in a nursing facility in Alameda, California. Vivian wants to move back home with her daughter but she needs assistance with dressing, bathing, cooking her meals, and getting to her doctor’s appointments. Her daughter works a full-time job and cares for her two teenage children, so she is unable to provide all the support her mother needs.
Like many residents of nursing facilities, if Vivian could access programs that provide in-home help, she could return to the community. These services are known as home and community-based services (HCBS) and range from assistance with cooking and bathing, access to community-based day centers, case management, home modifications, to name just a few and are made available through the state’s Medicaid program known as Medi-Cal. Unfortunately there are barriers that people encounter in accessing these services leaving many people like Vivian unnecessarily institutionalized and living apart from family and community.
It doesn’t have to be this way. Collecting, reporting, and analyzing data on access to and utilization of HCBS would allow California to uncover the issues that keep eligible older adults and people with disabilities like Vivian from accessing HCBS and to develop strategies to address those barriers. One difficulty that Vivian, and others who don’t speak or understand English, encounter is a language barrier. There are other barriers based on where a person lives, their disability, and likely many more, but without the data to determine who is accessing and using HCBS, it’s impossible to know where the problems lie.
There is opportunity for change. California’s commitment to equity and new, financial investments in HCBS present a key opportunity to institute change and collect and report robust data on access and utilization of HCBS that will ensure all aging adults and people with disabilities have access to these critical supports.
To support the state’s efforts to ensure equitable access to HCBS, Justice in Aging, with support from the California Health Care Foundation, authored a paper, Using Data for Good: Toward More Equitable Home and Community-Based Services in Medi-Cal, summarizing the challenges to data collection and reporting for HCBS, a review of the publicly available data on HCBS applicants and recipients, recommendations to improve data collection and reporting, and strategies to move recommendations forward. Recommendations include:
- Establishing standards for data collection and reporting applicable to all HCBS and long-term care programs, including demographic elements such as race and ethnicity, age, language, and type of disability
- Establishing access and utilization measures that are unique to each HCBS program
- Standardizing the frequency of data collection and reporting for each HCBS and long-term care program
- Collect and report HCBS data intersectionally, e.g. report data with more than one demographic data element, to identify overlapping disparities
- Address administrative and infrastructure barriers to comprehensive and reliable data
- Engage HCBS consumer stakeholders in the process