Long-Term Services and Supports

Long-term services and supports (LTSS) are used by individuals of all ages with functional limitations and chronic illnesses who need assistance to perform routine daily activities.  

Long-term services and supports can be costly both for those needing care and for family caregivers. Moreover, these costs often come at a time when individuals and their families are most vulnerable and in a context where they have had little opportunity to prefund or insure against such risks. The fundamental LTSS financing problem today is the absence of an effective insurance mechanism to protect people against these costs.

What are Long-Term Services and Supports and Why are They Important?

Long-term services and supports  are used by individuals of all ages with functional limitations and chronic illnesses who need assistance to perform routine daily activities. These are basic activities of daily living: eating, dressing, using the toilet, bathing, getting out of bed, and crossing the room to sit in a chair. Then there is another category of function with tasks called instrumental activities of daily living such as writing checks, paying bills, cleaning the house, cooking, and going shopping.

Millions of Americans of all ages with intellectual and developmental disabilities, mental health disabilities, physical disabilities, and/or disabling chronic health conditions need access to long-term care services. The number of Americans needing access to LTSS is expected to grow substantially in the coming decades (See: Demand for Long-Term Services and Supports Will Rise).

LTSS are provided in institutional settings, such as nursing facilities, as well as in home and community-based settings. Over time, there has been a shift towards providing care in home and community-settings  instead of institutions due to patient preferences and the Olmstead Supreme Court decision against the unjustified institutionalization of people with disabilities under the Americans with Disabilities Act. A majority of long-term care is provided by friends and relatives in home and community-based settings.

The fundamental goal of LTSS is to help individuals with functional limitations  go about their daily lives safely while maintaining quality of life and maximizing independence in their preferred community setting. With access to care and supports, seniors and individuals with disabilities are better able to make choices about where they live and how they spend their time. Devastating and costly health incidents – such as falls and malnutrition – can often be prevented with proper services and supports such as personal assistance, home modifications for mobility impairments, and home meal delivery programs. But without access to appropriate, high-quality care, individuals with functional limitations may suffer further health deterioration, which in turn causes unnecessary health care spending as well as unfavorable outcomes for them.

For more detailed information, see these Academy reports:

Long-Term Services and Supports and the Current Health Care System

Ensuring access to long-term services and supports is a problem that worries almost everyone at one point or another in their lives. How do you pay for it without  breaking the bank for taxpayers or placing an intolerable burden on the backs of individuals and families? The need for extended care has become a reality due to the longevity revolution with millions of people living longer and reaching an advanced age where infirmities are likely to rob them of independence.

Yet the health care system isn't designed to cope with the need for LTSS. The insurance and government programs are designed to pay for acute care: the detection, treatment, and solution of a short-term illness subject to either c        ombat from a surgeon's scalpel or a pharmaceutical fix or both.

Contrary to popular belief, Medicare does not cover LTSS; rather, Medicare covers only post-acute care, such as skilled nursing facility care, focusing primarily on short-term needs. Medicaid serves as the primary public payer for nursing home care, covering roughly one-third to half of all spending, but it is available only on a means-tested, asset-tested basis for those at a certain threshold of financial and/or medical need. Many middle-income people “spend down” and use their assets to pay for care until they have very little left and qualify for Medicaid. Those who qualify for Medicaid (whether low or middle-income) must contribute most of their income to their care costs, losing financial independence, and may be forced to enter a nursing home because they cannot access sufficient home- and community-based services or afford to remain at home.

The High Cost of Long-Term Care

Due to the gaps in coverage of LTSS in the health care system, family out of-pocket spending pays for as much as 40 percent of all paid care. But for both older and younger people with LTSS needs, costs are unpredictable and varied. About one in six seniors and their families will spend over $100,000 out-of- pocket for long-term care before they die. For over 15 percent of seniors above the age of 65, their (is that right?) total cost of long-term services and supports across all payers will exceed $250,000; for 9 percent, out-of-pocket costs alone will exceed that amount.

In order to fill in the gaps of what is covered by public insurance programs, many individuals and families may turn to private long-term care insurance; however, the private long-term care insurance market has declined over the past decade. There have been substantial declines in sales of policies and number of insurance carriers, and these policies often have premiums that are unaffordable for most, while the coverage offered under the available plans is not sufficient enough to cover the catastrophic LTSS need. As a result, consumers tend to forgo insurance and pay for costs out of their own pocket.

The reality of LTSS costs to families extends beyond direct out-of-pocket spending on health services. Massive emotional and psychological burdens fall on the helpers who provide the care, whether they are spouses, other family members, or friends and neighbors who take time from work and other responsibilities. Estimating the number of caregivers is a challenging undertaking, but research suggests that at least 17.7 million Americans are providing care to an aging loved one coping with functional limitations.

 

Demand for Long-Term Services and Supports Will Rise

The rise in the aging population will increase the number of people needing LTSS. By 2050, the 85 or older population will more than triple (growing by 208 percent), while the population younger than 65 will increase by only 12 percent. The number of seniors needing LTSS is expected to rise from 6.3 million in 2015 to an estimated 15 million by 2050. Although the need for long-term care will continue to rise, the availability of family caregivers is projected to decline. In a little over a decade—by 2030—there is projected to be a national shortage of 3.8 million unpaid family caregivers and 151,000 paid care workers. By 2040, the shortfall is expected to grow to 11 million family caregivers and 355,000 paid workers.

With the need for LTSS projected to rise and the availability of family caregivers projected to decline, there will be a growing need for paid long-term services and supports. Because of state budget constraints and other financial demands, state Medicaid programs—the primary public payers of LTSS—will face challenges  trying to meet the growing  demand. Our current system of relying heavily on Medicaid to finance long-term services and supports will overburden states, likely at the expense of pursuing other critical budget priorities. In addition, increased need for Medicaid LTSS will put substantial strain on the program’s ability to provide other forms of much-needed basic health care coverage for low-income individuals and families.

Long-Term Services and Supports and Social Insurance

The lack of an efficiently financed, well-functioning, and broadly accessible system of long-term services and supports is heavily burdening American families, state and federal budgets, and the economy as a whole. These problems will only worsen in the coming decades as the Boomers age into their 80s and beyond. At the same time, the economic contributions and quality of life of working-age people with disabilities remain unnecessarily limited due to the lack of adequate services. Congress has a range of policy options at its disposal to address the LTSS needs of seniors and working-age people with disabilities.

Social insurance represents a promising approach to meeting the challenges of ensuring broad access to LTSS. A universal and affordable program is necessary to achieve broad coverage, which is particularly important given the nature of the LTSS risk. Many people will not have any need for LTSS; others will need it for a moderate duration; and a small number will face catastrophic expenses. As a result, it is difficult for individuals and families to plan to meet what seems to them to be an uncertain need for LTSS. Yet, the lack of availability of affordable help when LTSS is needed threatens economic and retirement security both individuals and families. A social insurance program would be an efficient way to mitigate the financial risk associated with LTSS. The Academy’s LTSS research will continue to analyze potential policy pathways to using a social insurance framework to achieve universal LTSS.

Experts to Contact on Long-Term Services and Supports

Lowell Arye
Executive Director
Alliance for the Betterment of Citizens with Disabilities
(609) 581-8375
lowell@abcdnj.org
Christine Bishop
Professor and Director, Ph.D. Program
Brandeis University
The Heller School for Social Policy and Management
(781) 736-3942
bishop@brandeis.edu
Jeffrey R. Brown
Assistant Professor of Finance
University of Illinois at Urbana-Champaign and National Bureau of Economic Research
(217) 333-3322
brownjr@uiuc.edu
Bing Chen
Frank J. Manning Eminent Scholar's Chair in Gerontology
University of Massachusetts
(617) 287-7326 (office)
bing.chen@umb.edu
David M. Cutler
Professor of Economics
Faculty of Arts and Sciences
Department of Economics
Harvard University
(617) 496-5216 (office)
(617) 271-5013 (cell)
dcutler@harvard.edu
Judy Feder
Professor and Dean of Public Policy
Georgetown University
(202) 687-8397 (office)
federj@georgetown.edu
Len Fishman
President and Chief Executive Officer
Hebrew SeniorLife
(617) 363-8211
fishman@mail.hrca.harvard.edu
Robert B. Friedland
Director
Center on an Aging Society
Georgetown University
(202) 687-0881 (direct)
(301) 452-3236 (cell)
rbf4@georgetown.edu
Thomas Golden
Faculty
Program on Employment and Disability
School of Industrial and Labor Relations
Cornell University
(607) 255-2731 (voice)
(607) 255-2891 (TTY)
(607) 227-6343 (cell)
(607) 565-8981 (home)
Vicki Gottlich
Attorney
Center for Medicare Advocacy, Inc.
(202) 216-0028 x 103 (office)
(301) 928-6610 (cell)
(301) 570-0599 (home)
vgottlich@medicareadvocacy.org
Richard L. Kaplan
Professor of Law
University of Illinois College of Law
(217) 333-2499
(217) 359-1819 (home)
rkaplan@law.uiuc.edu
 
   
Marilyn Moon
Vice President and Director Health Program
American Institutes for Research
(301) 592-2101 (office)
(301) 951-4385 (home)
mmoon@air.org
Martha Priddy Patterson
Director, Employee Benefits Policy Analysis
Deloitte & Touche
(202) 879-5634 (office)
(301) 656-8781 (home)
mapatterson@deloitte.com
Karen Pollitz
Project Director
Georgetown University Health Policy Institute
(202) 687-3003 (office)
www.healthinsuranceinfo.net
 
John Rother
Policy and Strategy
AARP
(202) 434-3704 (office)
(202) 431-9180 (cell)
(301) 652-5576 (home)
Jrother@AARP.org
Diane Rowland
Executive Vice President
Kaiser Family Foundation
(202) 347-5270 (office)
(202) 543-6707 (home)
drowland@kff.org
Jacque J. Sokolov
Chairman and Senior Partner
Sokolov, Sokolov, Burgess (480) 707-4521
(480) 220-8256 (Assistant's cell number)
JJSPSO@aol.com
Robyn Stone
Senior Vice President, Research, LeadingAge
Co-Director, LeadingAge LTSS Center at UMass Boston
(202) 508-1206
(202) 903-6059 (cell)
rstone@leadingage.org
Bruce C. Vladeck
Principal
Ernst & Young, LLP
Health Sciences Advisory Services / AABS
(212) 773-0825
(917) 692-2212 (cell)
bruce.vladeck@ey.com
Paul Van de Water
Vice President for Health Policy
National Academy of Social Insurance
(202) 452-8097
paulv@nasi.org
Shelley White-Means
Professor and Chair of Health Science Administration
University of Tennessee
(901) 448-7666
swhiteme@utmem.edu