Abstract
About 12 million people with disabilities and older adults in the United States need LTSS, or
long-term services and supports—health and social services for people who need help with
eating, bathing, medication management, meal preparation, mobility, and other activities
of daily living. Medicaid is the primary source of funding for these services.
Most recipients prefer to receive LTSS at home, rather than in institutions like nursing
homes. And this goes beyond simple preference: the Americans with Disabilities Act (ADA),
as well as the Olmstead v. L.C. Supreme Court decision, affirms people’s right to live in the
most integrated setting that meets their needs. Medicaid offers an alternative to
institutional care, called Home- and Community-Based Services, or HCBS. These services
include in-home personal care, transportation, assistive technology, adult daycares, home
modifications, and supported employment. Since HCBS ensures that people receive the
help they need within an integrated setting, it’s one way to uphold the rights guaranteed in
the ADA and Olmstead. High-quality HCBS allows people to direct their services and define
their goals, live independently, participate in the community, and age with their human
dignity intact.
But not everyone who needs HCBS
receives them: state Medicaid
programs must pay for nursinghome care, but they are not
required to cover HCBS. Although
access to these services has
increased over the past few decades,
only 56% of total Medicaid
spending on LTSS goes to HCBS.
Also, states have a great deal of
control over their Medicaid systems, meaning that states’ programs, services, and eligibility
requirements can vary significantly—and states also control how many eligible people can
receive services through enrollment caps and waiting lists. In the US, over 820,000 people
are on waiting lists for services, and the average wait time is three years or more. When
older adults and people with disabilities don’t receive the services they need, their health
and quality of life decline. Earlier studies found a connection between unmet HCBS needs
of 2 5
and a variety of adverse outcomes, including hospitalization, institutionalization, and even
death.
Because these adverse outcomes have wide-ranging effects both on individual service
recipients and the community at large, we conducted a study with two goals: learning how
many people needed more services than they were receiving, and understanding the
connection between unmet HCBS needs and health and community living outcomes. We
examined survey data on adults who were over the age of 65 or who had physical disabilities
and were receiving Medicaid HCBS in 13 different states.