A call for better data collection on the long-term services and support needs of working-age adults with disabilities

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The COVID-19 pandemic has been particularly disruptive for people who need the regular support of others in their daily lives, including people with disabilities. While the focus has rightly been placed on people residing in nursing homes during the pandemic, only about 10 percent of the estimated 14 million adults in the United States who require long-term services and supports (LTSS) reside in nursing homes or other facilities. The remaining 90 percent who reside in the community — nearly half of whom are working-age adults — are also significant risk of COVID-19 infection, as good as losing trusted services and support systems and experiencing social isolation.

Gaps in data on working-age adults with disabilities

This sudden disruption for adults living in the community with SSLT needs has heightened our concern about the lack of information we have about them, especially 18 to 64 year olds. Data is readily available on seniors (65 and over) who need LTSS, through nationally representative surveys and Medicare administrative data. However, there is no similar information on working-age adults with disabilities.

Earlier this year, President Biden has offered to invest $ 400 billion expand access to Home and Community Services (HCBS) funded by Medicaid. Medicaid is the primary payer of HCBS, which is provided by LTSS in more integrated community settings as opposed to institutional settings. HCBS are essential supports that promote community life and prevent placement in an institutional setting. Services range from personal care to home delivered meals. While the size and scope of this proposed investment is being debated in Congress, its adoption would likely make filling these gaps in LTSS need data more important than ever to guide the planning and implementation of the additional funds. Without significant investments in data infrastructure, we will continue to be ill-prepared to meet the needs of all people with disabilities during the COVID-19 emergency and future emergencies, and the needs of this growing population in general.

Commonwealth Fund-supported projects to fill data gaps

The Commonwealth Fund has been working for several years to improve health care for patients with high needs and high costs—the 5 percent of patients who account for almost 50 percent of health spending. Through this work, he came to recognize that disabled adults of working age drive a large portion of health spending in the United States and have unique, often unmet, LTSS needs. The Commonwealth Fund believes it is essential to create data resources on this population to help federal and state policymakers identify and meet the LTSS needs of this population with disabilities.

Improve data on LTSS needs of working-age adults with disabilities. Since 2018, the Commonwealth Fund has supported Long-term quality alliance (LTQA) as part of a multi-year initiative to address the data gap on the LTC needs of working-age adults with disabilities. LTQA conducted a environmental scan existing national data resources to identify gaps and an advisory group of leading researchers and national stakeholder organizations (see page 14) to develop strategies to fill them. A key strategy identified is to add additional questions about the needs and use of SSLT to the Behavioral Risk Factor Surveillance System (BRFSS), the largest and longest-running national survey of adults in the United States, led by the Centers for Disease Control and Prevention (CDC) and administered by the states. The advisory group recommended adding additional questions to the BRFSS surveys of selected states first, which would allow the LTQA to pilot survey questions and analytical techniques before proceeding with a national survey.

Based on the recommendations, the Commonwealth Fund supported a second project with LTQA, in collaboration with Brandeis University, to test LTSS data collection strategies in states. After soliciting applications from all 50 states and 15 expressed interest, the project team ultimately selected Washington state and Texas for the first pilots. Washington has sought to develop data resources on LTSS across the age spectrum to help plan Medicaid and the implementation of its LTSS Trust Act-The Nations first state-run public long-term care insurance program. Texas aimed to study the characteristics, service preferences and unmet service needs of more than 150,000 people on its interest lists for the Medicaid-funded HCBS in response to a legislative mandate.

As part of the ongoing pilots, the project team worked with Washington and Texas to add additional questions to their BRFSS 2021 survey, including questions on respondent functional limitations, unmet LTSS needs, frequency of media already used and their source of payment, and any current expenses. Responses will be disaggregated by demographic variables such as race and ethnicity in order to explore disparities in the need and use of LTSS. In Washington, this data, combined with state-level administrative data on the population currently receiving state and / or federal funded services, will help the state plan future investments in providing LTSS to people. people with complex needs. The pilots will result in a replicable state model to improve data collection and understanding of LTSS needs.

After learning from these pilots, LTQA aims to promote the inclusion of similar questions in other states by creating a national module with the CDC that will allow states to easily add the questions to their BRFSS survey each year.

The main challenges faced by the project team and the States were the limitations of a telephone survey to reach and identify the needs of the disabled population, as well as the problems presented by an already long BRFSS survey with limited space for questions. additional supplementary questions. . The team hopes to identify, with States, practical solutions to these challenges in order to move forward in anticipating and meeting the LTSS needs of this under-researched group.

Impact of COVID-19 on Medicaid Enrollments Receiving HCBS. For another project funded by the Commonwealth Fund and led by the Community Living Policy Center (CLPC) at Brandeis University and in collaboration with LTQA, the same project team works with LTSS plans managed fill data gaps on the impacts of COVID-19 on HCBS beneficiaries. The project team will analyze data from managed care organizations that are members of the National Association of MLTSS Health Plan on excess deaths – deaths from all causes exceeding the expected number for a given location and time – and COVID-19-related deaths in 2020, stratified by age (65 and over vs. under 65) and by race and ethnicity.

Look ahead

As demand for LTSS increases over the next two decades, state and federal governments will be challenged to identify and respond to these needs, especially given recent interest in increasing federal investments in Medicaid-funded HCBS programs.

The Commonwealth Fund invites other donors to join its efforts to improve data collection on the LTSS needs of people with disabilities, especially adults of working age. Developing a clearer picture of the current and projected demand and use of LTSS among adults with disabilities under 65 is of critical importance to the ability of policymakers to plan and invest strategically in the support for this high-need population.

Associated resource

“Long-term care efforts supported by foundations”, Lee L. Prina, GrantWatch Section of Health Affairs, March 2021 issue.


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