Note: No national survey currently collects adequate data on LTSS needs across all populations and ages. We used the American Community Survey to provide broad estimates on who may need LTSS based on two questions. However, it should be noted that these estimates are an approximation of LTSS needs based on what data is available.
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FAQs
Why did you choose this dataset?
The American Community Survey (ACS), implemented by the United States Census Bureau, is one of the largest, broadest, and most comprehensive surveys in the country. The ACS selects a random sample of approximately 3.5 million addresses each year. The ACS data are nationally representative of the U.S. population and can provide reliable estimates across a variety of geographies, such as the state level. In the dashboard, we used the 2017-2021 5-year ACS sample, which includes a larger sample size of roughly 15 million people, to improve the reliability of our estimates. Though the ACS is widely used to measure disability in federal surveys, it is important to acknowledge the limitations of this data. Comparing Measures Of Functional Difficulty With Self-Identified Disability: Implications For Health Policy documents how the ACS underestimates disability, particularly undercounting people with mental health and chronic illness disabilities. Despite its limitations, using ACS data for this dashboard allowed us to share data on LTSS need in individual states and amongst specific populations within those states—something that isn't possible with other data.
How is LTSS need defined?
Anyone in the American Community Survey (ACS) who identified as having one or more of the following disabilities:
- Self-care Disability: Because of a physical, mental, or emotional condition, the person has serious difficulty dressing or bathing.
- Independent Living Disability: Because of a physical, mental, or emotional condition, the person has difficulty doing errands alone such as visiting a doctor’s office or shopping.
- The ACS sample includes individuals living in their own home as well as individuals residing in institutional and non-institutional group quarters (nursing homes, group homes, assisted living, prisons, college dorms, homeless shelters, and other institutional settings).
Why does the dashboard not include other intersectional or marginalized identities, such as LGBTQ+ identities?
Unfortunately, the source data does not include information about sexual orientation or gender identity. As data becomes more available, we hope to include this information in the dashboard.
Can you separate people with a specific developmental disability?
Unfortunately, no. The dataset has limited questions on disability. In addition to the self-care and independent living disability questions, the ACS only includes four other broad disability questions related to vision, hearing, physical, and cognitive disabilities.
Could we break down the need for LTSS by county?
Many of the over three thousand counties in the United States have a small number of people, let alone disabled people with LTSS needs. The number of people gets even smaller when applying further filters, such as sex, age group, poverty status, race/ethnicity, language, and rural status. To protect individuals’ identities and maintain reliable estimates, we are not able to display data by county.
How will this be used?
We hope that this dashboard can be used by self-advocates, policymakers, disability advocacy organizations, and others interested in LTSS to evaluate HCBS needs in their state or region.
Why do some bars disappear in certain categories when filters are applied?
In some cases, bars in the graph may disappear when multiple filters are selected. This occurs because we suppress data for small groups where the estimates are not reliable to ensure accuracy and protect privacy.
Why are the population numbers rounded (e.g. exactly 5000)? Given that the source data is a weighted survey, where are the standard errors or confidence intervals?
We round the numbers in this dashboard because these numbers are estimates of the number of people who need LTSS based on weighted survey data. For anyone interested in the raw estimates, standard errors, and confidence intervals, please contact us at CLEquity@brandeis.edu.
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We’re working with a consultant to continuously improve any accessibility issues. Accessibility is a priority to us-please contact us at CLEquity@brandeis.edu if you encounter any issues.
How to cite this dashboard
Community Living Equity Center (2024). Who Needs LTSS? [Data dashboard]. The Lurie Institute for Disability Policy. https://heller.brandeis.edu/community-living-policy/clec/who-needs-ltss.html
Funding Statement
The contents of this dashboard were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RTCP0006 & 90RTCP0009). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The content is solely the responsibility of the authors and does not necessarily represent the official views of NIDILRR, ACL, or HHS.
The dashboard is also funded by the Robert Wood Johnson Foundation via a grant entitled, Examining Disabled People of Color's Experience with Structural Racism/Ableism Barriers in Accessing Medicaid Home & Community-Based Services.