About Independence and Long-Term Services and Supports
People with disabilities and older adults want to preserve their independence and freedom. Long-term services and supports are key to that goal.
Americans rely on LTSS to stay independent and maintain dignity and quality of life.
Of LTSS recipients are 65 or younger—while 43% are under 65, including children and adults.
The year the first wave of Baby Boomers turns 80, increasing demand for long-term care.
Family and friends provide unpaid care alongside millions of paid caregivers nationwide.
For nearly two decades, the National Advisory Board has demonstrated the power of lived experience in shaping long term services and supports. By working together we have collectively shaped a more person-centered, accessible, and inclusive healthcare ecosystem. Our work together demonstrates the value of including, listening to, and acting on the perspectives of people with disabilities and older adults."
Long-Term Services and Supports: the Financial Landscape
Medicaid paid for more than half of the $415 billion that the US spent on LTSS in 2022, most of which went to home and community-based services.1
Furthermore, 20 percent of Medicare enrollees and 15 percent of Medicaid enrollees are dual eligible beneficiaries, who account for about a third of Medicare and Medicaid spending. Dual eligible beneficiaries are also over twice as likely to use LTSS as other Medicaid recipients, and more than five times as likely as other Medicare recipients.2
Beyond the formally paid workforce, there are also millions of family caregivers (most of whom are unpaid) who play an important role in filling care needs for older adults and people with disabilities. In 2021, about 38 million family caregivers provided, on average, 18 hours of care per week.3
As the largest generation in our history grows older, most people who need long-term care live in the community, not in institutions—yet our policies still treat institutional care as the default instead of the exception. Public policy must catch up with that reality by prioritizing home- and community-based services, expanding accessible and affordable housing, and strengthening the direct-care workforce, so people can age with dignity and choice—connected to the people, places, and purpose that make life worth living."
Prioritizing Independence and Home and Community-Based Services
People with disabilities and older adults want to preserve their independence and freedom. Home and Community-Based Services (HCBS) make that a reality:
- Most Americans prefer to live in their own homes or in community settings, not institutions.4
- Repeated surveys show that older adults and people with disabilities consistently express a strong desire to remain in their own communities rather than live in institutional settings.5
- Nearly 90 percent of adults who are age 65 and older want to stay in their home for as long as possible.6
- Seventy-eight percent of adults who are age 65 and older intend to remain in their current residence as they age.7
- Eighty-seven percent of individuals with disabilities who are age 50 and older prefer to live in their own homes.8
LTSS is a patchwork of systems
Many Americans are unaware that few options exist for people who require assistance with daily activities and personal care. It is not until the need for LTSS becomes personal that most Americans even begin to experience and recognize the complexities of our nation’s healthcare infrastructure. It is often only when individuals have to manage these issues in their own lives that they find a common theme prevails—the healthcare infrastructure is fragmented and confusing.
1 Chidambaram, Priya, et al. 10 Things about Long-Term Services and Supports (LTSS). KFF. Jul. 2024. https://www.kff.org/medicaid/10-things-about-long-term-services-and-supports-ltss/.
2 Anthony, Stephanie, et al. Integrating Medicare-Medicaid Benefits for Dually Eligible Beneficiaries: A Strategy for Strengthening Long-Term Services and Supports. https://www.chcs.org/media/Integration-Strategy-1-Strengthening-LTSS-Toolkit_032019.pdf.
3 Ibid
4 Enid Kassner, AARP Public Policy Institute, AARP Blog, “Home- and Community-Based Services: The Right Place and the Right Time” (August 19, 2013), http://blog.aarp.org/2013/08/19/home-and-community-based-services-the-right-place-and-the-right-time/.
5 https://acl.gov/about-community-living
6 AARP Public Policy Institute and National Conference of State Legislatures, “Aging in Place: A State Survey of Livability Policies and Practices” (2011), http://assets.aarp.org/rgcenter/ppi/liv-com/ib190.pdf.
7 Joint Center for Housing Studies of Harvard University, “The State of the Nation’s Housing” (2014): 16, http://www.jchs.harvard.edu/sites/jchs.harvard.edu/files/sonhr14-color-full.pdf.
8 Enid Kassner et al., AARP Public Policy Institute, “A balancing act: State long-term care reform” (July 2008): 1. https://collections.nlm.nih.gov/master/borndig/101479532/2008_10_ltc.pdf.
A modernized healthcare infrastructure is crucial to preserving independence for Americans with disabilities and older adults.
The National Advisory Board believes that the modernized healthcare infrastructure required to meet the goals, preferences, and needs of older adults and individuals with disabilities must include the Six Principles. Please join with us in promoting and furthering them.