by Meghan Hendricksen and Shreyasi Deb
The heat is on. Facing a September 30 deadline, federally chartered Long-Term Care Commission is in a sprint to hear from stakeholders and develop relevant recommendations to Congress. The second such meeting, held in mid-July, featured invited testimony from Dr. Joanne Lynn, Director of Altarum Institute’s Center for Elder Care and Advanced Illness Her full testimony is here. Two additional meetings are set for late August.
Panelists began at the beginning, debating the scope of services that might be properly classified as long-term care. Robyn Stone, executive director for LeadingAge’s Center for Applied Research, suggested that so-called “post acute” services, which typically last some 20 days and are delivered as part of Medicare’s skilled nursing facility benefit, are not really of the LTSS framework. Stone further emphasized that long-term care is “not just about Medicaid…[the] middle and modest-income population needs to be a focus as well.” Stephen Kaye, Associate Professor at the University of California/San Francisco, took a broader view, suggesting that the scope of LTSS coverage extends to any services provided that include assistance with Activities of Daily Living (ADL).
What would success look like—and for whom?
Kaye suggested a relatively basic metric for defining successful care. He said that for the estimated 12 million Americans who face the challenge of finding affordable LTSS , that definition is this: “Are your needs met?” His colleagues said that in the current scheme, most people would say they are not.
David Braddock, Ph.D., executive director of the Coleman Institute for Cognitive Disabilities at the University of Colorado. Dr. Braddock described the challenges faced by Americans with intellectual and developmental disabilities (I/DD). For them, the most affordable service option is “supported living,” which relies primarily on family caregivers while providing individuals access to a package of services including transportation, respite, assistive and medical technology and other supports. The model has an average annual cost of about $26,000, significantly less than such costs in a state-operated institution, which total more than $220,000 annually. In 2011, national costs of such services were about $56 billion.
Currently, Braddock said, three million families receive no support. He recommended that improving LTSS must include expanding the availability of community-provided services that support these families. At the same time, sound LTSS public policy, he said, should promote independence, in part by allowing individuals with disabilities to participate in the workforce without jeopardizing receipt of LTSS. This essentially means developing LTSS o programs for those who do not qualify for Medicaid.
Individuals who have severe mental illnesses—and who often live with chronic health conditions–also require LTSS programs. Kevin Martone, executive director of the Technology Assistance Collaborative, testified that despite vast need, society generally fails to recognize the need of this population. In fact, Martone pointed to data indicating that mental illness is a factor in 1 of every 8 visits to the emergency department. The affordable housing crisis hits this population hard. Among those who are eligible for SSI that need is so pronounced that an estimated 500,000 live in nursing homes, jails and state hospitals.
Dr. Robyn Stone spoke to the needs of an older, frailer population. She noted that as older adults, particularly women, live longer lives, there will be a higher prevalence of dementia among people who need LTSS. Stone emphasized that although the Baby Boomer “age wave” has hit, “we still don’t have an infrastructure” for delivery of individually tailored LTSS services. Demographic trends are leading to a more diverse older population: By 2030, the percentage of non-white persons will account for one-third of the total population of older adults.
What Needs to Change?
While the first panel defined the services and population, the second focused on ways to better target care and resources. Dr. Joanne Lynn suggested that the current crisis in LTSS arises from demographic realities: a rapidly rising number of high-cost frail elders age 85 and older, combined with younger individuals who need assistance with two or more ADLs and those with cognitive impairment who require constant supervision. Lynn advised that LTSS targeting this population be dramatically reformed, organizing can mainly be delivered at home, and which is deliberately designed to reflect the values and preferences of each person receiving services.
Such reform presents challenges. The first, Lynn said, is to identify frail elders in communities, and the second is to use waivers and innovative protocols to create a coordinated package of LTSS programs able to support elders living at home at a lower per capita cost. The third challenge will be to establish a community-focused form of governance that can manage a good system of care, on an ongoing basis, by estimating and making necessary adjustments to a community’s core capacity (i.e. its workforce, its health care providers and social supports) in relation to estimates and projections of demand for services and the available resources.
Lynn’s co- panelists included Randall S. Brown, vice-president and director of health research at Mathematica Policy Research; Josefina Carbonell, senior vice president of Independent Living Systems, Lynn Feinberg, senior strategic policy advisor, AARP Public Policy Institute; and Carol Regan, government affairs director of the Paraprofessional Healthcare Institute.
Brown noted that among the 15 Medicare care coordination demonstration programs, four achieved significant savings from reduced hospitalization costs among high-risk cases. He recommended that capitated and fee-for-service models (such as those represented by the PACE and GRACE programs) should be followed closely as they continue to evolve and develop.
Feinberg and Regan focused on issues relevant to family caregivers and direct care workers — not only in terms of their central role in delivering LTSS, but also in terms of how their stress, burden, and marginalized status can have serious negative effects on their lives, and the lives of the people for whom they care.
Carbonell, a former head of the Administration on Aging, urged Commissioners to maintain and strengthen the aging services network and other community organizations. She called for partnerships that “bridge the health care delivery system and our social supports,” and urged policymakers and stakeholders to “not replace what we have” in community resources and funding with “more ‘medicalized’ care coordination.” Carbonell said that “we should not overlook the successes achieved by the Older Americans Act [and organizations in the aging services network that have already built] trust in the community…and have the ‘know-how.’”
Despite the daunting task of its own 90-day deadline, Commissioners seemed to express a sense that the face of LTC services is beginning to change, and that further innovation and monitoring is necessary, and that the resulting insights and improved patterns of care will likely yield better results. Although getting those results will require tremendous system changes, individuals who rely on LTSS deserve no less.
The Commission welcomes ideas from stakeholders and the public, and has specific instructions for those interested in submitting comments.
Key words: long-term services and supports, LTSS, Long-term Care Commission, Joanne Lynn, frail elders