LTSS affects everyone. LTSS includes a continuum of services provided in the home and community or an institutional setting. These supports help older people and adults with physical disabilities manage tasks that would be difficult or impossible to perform on their own, such as personal care (e.g., bathing, dressing, and toileting); complex care (e.g., medication administration, wound care); home care (e.g., help with housekeeping and meal preparation), and transportation. Although older people are more likely to need LTSS, people of all ages rely on the LTSS system. In 2018, more than half (56 percent) of American adults who needed LTSS were ages 65 or older, while 44 percent were ages 18 to 64.1 The LTSS system can also be a source of support for approximately 41 million family caregivers who help family and close friends with daily tasks.2 In 2017, collectively about $235 million was spent on formal (paid) LTSS across all settings.3
As the country ages and adults with physical disabilities seek more options to remain independent, the need for LTSS will continue to grow. States have the opportunity to act now in strengthening LTSS systems and identifying new ways to maximize the use of limited resources to account for these demographic shifts.
The Scorecard offers accurate, reliable, and comparable data that can serve as the basis for evidence-based solutions so that older people and adults with disabilities in all states can exercise choice and control over their lives, thereby maximizing their independence and well-being. High-performing LTSS systems also ensure that family caregivers have the support they need when caring for close relatives and friends.
Furthermore, the Scorecard strives to present a complete and comprehensive assessment of LTSS system performance across five key characteristics; but the Scorecard can only be as complete and comprehensive as the data that are available to measure performance, and data availability continues to fall short of where it ought to be. From the beginning of the Scorecard project, a key finding has been that better data are needed to assess state LTSS system performance. In the first Scorecard, released in September 2011, six specific data gaps were identified, and others have subsequently been noted.
In the decade since that initial assessment, there have been some successes in addressing these gaps, particularly in the area of effective transitions, and measures of subsidized housing and transportation policies. However, there have been some retreats in data quality and availability as well: quality of life in the community, staffing turnover, and basic Medicaid LTSS participant and spending data. In the last Scorecard, continued erosion of data availability to measure quality of life and quality of care resulted in the dimension being considered “incomplete.” That continues to be the case in this Scorecard, and better data are still needed, such as prevention of infection in all LTSS settings (e.g., nursing homes, assisted living, adult day care, and home care).