Long-term care

{{Short description|Services for the elderly or those with chronic illness or disability}} {{CS1 config|mode=cs1}} [[File:Nursing home.JPG|thumb|350px|Elderly man at a nursing home in Norway]]

'''Long-term care''' ('''LTC''') is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.<ref>{{cite book|title=Essentials of the U.S. Health Care System| vauthors = Shi L, Singh D |publisher=Jones & Bartlett Learning | edition = 4th |date=December 8, 2015 |isbn=978-1-284-10055-6 |page=232 }}</ref>

It is common for long-term care to provide custodial and non-skilled care, such as assisting with activities of daily living like dressing, feeding, using the bathroom, meal preparation, functional transfers and safe restroom use.<ref>{{cite web| vauthors = Kernisan L |title=Activities of Daily Living: What Are ADLs and IADLs?|url=https://www.caring.com/articles/activities-of-daily-living-what-are-adls-and-iadls|publisher=Caring|access-date=16 October 2015}}</ref> Increasingly, long-term care involves providing a level of medical care that requires the expertise of skilled practitioners to address the multiple long-term conditions associated with older populations. Long-term care can be provided at home, in the community, in assisted living facilities or in nursing homes. Long-term care may be needed by people of any age, although it is a more common need for senior citizens.<ref name="WHO Bulletin">{{cite journal | vauthors = Herbermann JD, Miranda D | title = Defusing the demographic "time-bomb" in Germany | journal = Bulletin of the World Health Organization | volume = 90 | issue = 1 | pages = 6–7 | date = January 2012 | pmid = 22271957 | pmc = 3260585 | doi = 10.2471/BLT.12.020112 }}</ref>

==Types of long-term care== Long-term care can be provided formally or informally. Facilities that offer formal LTC services typically provide living accommodation for people who require on-site delivery of around-the-clock supervised care, including professional health services, personal care, and services such as meals, laundry and housekeeping.<ref name="Health Canada">{{cite web | work = Health Canada | url = http://www.hc-sc.gc.ca/hcs-sss/home-domicile/longdur/index-eng.php | title = Long-Term Facilities-Based Care | date = 3 April 2003 | access-date = 3 January 2012 }}</ref> These facilities may go under various names, such as nursing home, personal care facility, residential continuing care facility, etc. and are operated by different providers.

While the US government has been asked by the LTC (long-term care) industry ''not'' to bundle health, personal care, and services (e.g., meal, laundry, housekeeping) into large facilities, the government continues to approve that as the primary use of taxpayers' funds instead (e.g., new assisted living). Greater success has been achieved in areas such as supported housing which may still utilize older housing complexes or buildings or may have been part of new federal-state initiatives in the 2000s.<ref>{{cite book | vauthors = O'Keefe J, Wiener J | date = 2004 | chapter = Public funding for long term care services for older people with residential care settings. | veditors = Pynoos J, Hollander-Feldman P, Ahers P | title = Linking Housing and Services for Older Adults: Obstacles, Options and Opportunities | pages = 51–80 | location = New York, NY | publisher = The Haworth Press | isbn = 978-0-7890-2779-5 }}</ref>

Long-term care provided formally in the home, also known as home health care, can incorporate a wide range of clinical services (e.g. nursing, drug therapy, physical therapy) and other activities such as physical construction (e.g. installing hydraulic lifts, renovating bathrooms and kitchens). These services are usually ordered by a physician or other professional. Depending on the country and nature of the health and social care system, some of the costs of these services may be covered by health insurance or long-term care insurance.

Modernized forms of long-term services and supports (LTSS), reimbursable by the government, are user-directed personal services, family-directed options, independent living services, benefits counseling, mental health companion services, family education, and even self-advocacy and employment, among others. In home services can be provided by personnel other than nurses and therapists, who do not install lifts, and belong to the long-term services and supports (LTSS) systems of the US.

Informal long-term home care is care and support provided by family members, friends and other unpaid volunteers. It is estimated that 90% of all home care is provided informally by a loved one without compensation<ref name="Saltman"/> and in 2015, families are seeking compensation from their government for caregiving.

==Long-term services and supports== "Long-term services and supports" (LTSS) is the modernized term for community services, which may obtain health care financing (e.g., home and community-based Medicaid waiver services),<ref>{{cite web | url = https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html | title = Home & Community-Based Services 1915(c) | work = Centers for Medicare & Medicaid Services }}</ref><ref>{{cite journal | vauthors = Kane R | title = Thirty years of home-and community-based services: Getting closer and closer to home. | journal = Generations: Journal of the American Society for Aging. | date = April 2012 | volume = 36 | issue = 1 | pages = 6–13 | doi = | url = https://www.ingentaconnect.com/content/asag/gen/2012/00000036/00000001/art00002 }}</ref> and may or may not be operated by the traditional hospital-medical system (e.g., physicians, nurses, nurse's aides).<ref name="pmid12323072">{{cite journal | vauthors = Braddock DL | title = Public financial support for disability at the dawn of the 21st century | journal = American Journal of Mental Retardation | volume = 107 | issue = 6 | pages = 478–89 | date = November 2002 | pmid = 12323072 | doi = 10.1352/0895-8017(2002)107<0478:PFSFDA>2.0.CO;2 }}</ref>

The Consortium of Citizens with Disabilities (CCD)<ref>{{cite web | url = http://www.c-c-d.org/rubriques.php?rub=taskforce.php&id_task=9 | work = Consortium of Citizens with Disabilities | date = 2014 | title = Long-Term Services and Supports Taskforce | location = Washington, DC }}</ref> which works with the U. S. Congress, has indicated that while hospitals offer acute care, many non-acute, long-term services are provided to assist individuals to live and participate in the community. An example is the group home international emblem of community living and deinstitutionalization,<ref>{{cite book | vauthors = Johnson K, Traustadottir R | date = 2005 | title = Deinstitutionalization and People with Intellectual Disabilities | location = London, UK | publisher = Jessica Kingsley Publishers | isbn = 978-1-84310-101-7 }}</ref> and the variety of supportive services (e.g., supported housing, supported employment, supported living, supported parenting, family support), supported education.<ref>{{cite book | vauthors = Taylor S, Bogdan R, Racino J | date = 1991 | title = Life in the Community: Case Studies of Organizations Supporting People with Disabilities in the Community | location = Baltimore, MD | publisher = Paul H. Brookes Publishing Company | isbn = 978-1-55766-072-5 }}</ref><ref>{{cite report | vauthors = Ullmer D, Webster SK, McManus M | title = Cultivating Competence: Models of Support for Families Headed by Parents with Cognitive Limitations: A National Resource Directory. | location = Madison, WI | work = Wisconsin Council on Developmental Disabilities, Supported Parenting Project | date = 1991 }}</ref><ref>{{cite journal | veditors = Unger K | date = July 1993 | title = Special Issue on Supported Education | volume = 17 | issue = 1 | journal = Psychosocial Rehabilitation Journal | location = Boston, MA | publisher = International Association of Psychosocial Rehabilitation Services and the Department of Rehabilitation Counseling, Boston University }}</ref>

The term is also common with aging groups, such as the American Association of Retired Persons (AARP), which annually surveys the US states on services for elders (e.g., intermediate care facilities, assisted living, home-delivered meals).<ref>{{cite book | vauthors = Racino J | date = 2014 | title = Public Administration and Disability: Community Services Administration in the US | location = New York, NY | publisher = CRC Press, Francis and Taylor | isbn = 978-1-4665-7982-8 }}</ref> The new US Support Workforce includes the Direct Support Professional, which is largely non-profit or for-profit, and the governmental workforces, often unionized, in the communities in US states. Core competencies (Racino-Lakin, 1988) at the federal-state interface for the aides "in institutions and communities" were identified in aging and physical disabilities, intellectual and developmental disabilities, and behavioral ("mental health") health in 2013 (Larson, Sedlezky, Hewitt, & Blakeway, 2014).<ref>{{cite book | vauthors = Larson SA, Sedlezky L, Hewitt A, Blakeway C | date = 2014 | chapter = Chapter 10: Community support services workforce in the US. | veditors = Racino J | title = Public Administration and Disability: Community Services Administration in the US | pages = 235–254 | location = London, New York, NY, & Boca Raton, FL | publisher = CRC Press, Francis and Taylor | isbn = 978-1-4665-7982-8 }}</ref>

President Barack Obama, US House Speaker John Boehner, Minority Leader Nancy Pelosi, Majority Leader Harry Reid, and Minority Leader Mitch McConnell received copies of the US Senate Commission on Long Term Care on the "issues of service delivery, workforce and financing which have challenged policymakers for decades" (Chernof & Warshawsky, 2013).<ref name = "Chernof_2013">{{cite report | vauthors = Chernof B, Warshawsky M | date = September 2013 | title = Commission on Long Term Care: Report to US Congress | location = Washington, DC | publisher = US Senate | isbn = 978-0-16-092102-5 }}</ref> The new Commission envisions a "comprehensive financing model balancing private and public financing to insure catastrophic expenses, encourage savings and insurance for more immediate LTSS (Long Term Services and Supports) costs, and to provide a safety net for those without resources."<ref name = "Chernof_2013" />

The direct care workforce envisioned by the MDs (physicians, prepared by a medical school, subsequently licensed for practice) in America (who did not develop the community service systems, and serve different, valued roles within it) were described in 2013 as: personal care aides (20%), home health aides (23%), nursing assistants (37%), and independent providers (20%) (p. 10).<ref>{{cite book | vauthors = Litvak S, Kennedy J | date = 1991 | title = Policy Issues Affecting the Medicaid Personal Care Services Optional Benefit | location = Oakland, CA | publisher = World Institute on Disability }}</ref><ref>{{cite book | vauthors = Smith G | date = 1994 | title = Medicaid PCA Services in Massachusetts: Options and Issues. | location = Washington, DC | publisher = National Association of State Developmental Disabilities Services }}</ref><ref>{{cite book | vauthors = Kennedy J, Litvak S | date = December 1991 | title = Case Studies of Six State Personal Assistance Service Programs Funded by the Medicaid Personal Care Option | location = Oakland, CA | publisher = World Institute on Disability }}</ref> The US has varying and competing health care systems, and hospitals have adopted a model to transfer "community funds into hospital"; in addition, "hospital studies" indicate M-LTSS (managed long-term care services)<ref>{{cite book | vauthors = Saucier P, Kasten J, Burwell B, Gold L | date = 2012 | title = The Growth of Managed Long-Term Services and Supports (MLTSS) Programs | location = Washington, DC | publisher = Centers for Medicaid and Medicare and Truven Health Analytics }}</ref> as billable services. In addition, allied health personnel preparation have formed the bulk of the preparation in specialized science and disability centers which theoretically and practically supports modernized personal assistance services across population groups<ref>{{cite book | vauthors = Litvak S, Racino J | chapter = Part III: Personal Assistance Services. | veditors = Racino J | title = Policy, Program Evaluation and Research in Disability: Community Support for All | year = 1999 | pages = 141–221 | location = London, New York, NY, and Binghamton, NY | publisher = Haworth Press | isbn = 978-0-7890-0597-7 }}</ref><ref>{{cite book | vauthors = Flanagan SA | date = 1994 | title = Consumer-Directed Attendant Services: How States Address Tax, Legal, and Quality Issues | location = Cambridge, MA | publisher = MEDSTAT Group }}</ref> and "managed" behavioral health care "as a subset of" mental health services.<ref>{{cite book | vauthors = Anthony W, Cohen M, Farkas M, Gagne C | date = 2002 | title = Psychiatric Rehabilitation | location = Boston, MA | publisher = Boston University, Center for Psychiatric Rehabilitation, Sargent College of Health and Rehabilitation Services | isbn = 978-1-878512-11-6 }}</ref><ref>{{cite book | vauthors = Raskin NJ | date = 2004 | title = Contributions to Client-Centered Therapy and the Person-Centered Approach | location = Ross-on-the-Wye, United Kingdom | publisher = PCCS Books | isbn = 978-1-898059-57-8 }}</ref>

Long-term services and supports (LTSS) legislation was developed, as were the community services and personnel, to address the needs of "individuals with disabilities" for whom the state governments were litigated against, and in many cases, required to report regularly on the development of a community-based system.<ref>{{cite book | vauthors = Dybwad G, Bersani H | date = 1996 | title = New Voices: Self Advocacy for People with Disabilities | location = Cambridge, MA | publisher = Brookline Books }}</ref> These LTSS options originally bore such categorical services as residential and vocational rehabilitation or habilitation, family care or foster family care, small intermediate care facilities,<ref>{{cite journal | vauthors = Taylor SJ, McCord W, Searl Jr SJ | title = Medicaid dollars and community homes: The community ICF/MR controversy. | journal = Journal of the Association for the Severely Handicapped | date = September 1981 | volume = 6 | issue = 3 | pages = 59–64 | doi = 10.1177/154079698100600307 | s2cid = 157646507 }}</ref><ref>{{cite report | vauthors = Lakin KC, Hill B, Bruininks R | date = September 1985 | title = An Analysis of Medicaid's Intermediate Care Facility for the Mentally Retarded (ICF-MR) Program | location = Minneapolis, MN | publisher = University of Minnesota, Center for Residential and Community Services }}</ref> "group homes",<ref name="pmid7102732">{{cite journal | vauthors = Willer B, Intagliata J | title = Comparison of family-care and group homes as alternatives to institutions | journal = American Journal of Mental Deficiency | volume = 86 | issue = 6 | pages = 588–95 | date = May 1982 | pmid = 7102732 | doi = | url = }}</ref> and later supported employment,<ref>{{cite report | vauthors = Smith G, Gettings R | date = 1991 | title = Supported Employment and Medicaid Financing | location = Alexandria, VA | publisher = National Association of Developmental Disabilities Services, Inc. }}</ref> clinics, family support,<ref name="pmid2422520">{{cite journal | vauthors = Castellani PJ, Downey NA, Tausig MB, Bird WA | title = Availability and accessibility of family support services | journal = Mental Retardation | volume = 24 | issue = 2 | pages = 71–9 | date = April 1986 | pmid = 2422520 | doi = | url = }}</ref> supportive living, and day services (Smith & Racino, 1988 for the US governments).The original state departments were Intellectual and Developmental Disabilities, Offices of Mental Health,<ref>{{cite journal | vauthors = Farkas M, Anthony WA | date = 1980 | title = Training rehabilitation counselors to work in state agencies, rehabilitation, and mental health facilities. | journal = Rehabilitation Counseling Bulletin | volume = 24 | pages = 128–144 }}</ref> lead designations in Departments of Health in brain injury for communities,<ref name="pmid8002134">{{cite journal | vauthors = Wehman P, Booth M, Stallard D, Mundy A, Sherron P, West M, Cifu D | title = Return to work for persons with traumatic brain injury and spinal cord injury: three case studies | journal = International Journal of Rehabilitation Research | volume = 17 | issue = 3 | pages = 268–77 | date = September 1994 | pmid = 8002134 | doi = 10.1097/00004356-199409000-00008 }}</ref> and then, Alcohol and Substance Abuse dedicated state agencies.

Among the government and Executive initiatives were the development of supportive living internationally,<ref>{{cite report | vauthors = Smith GA | date = 1990 | title = Supportive Living: New Directions in Services for Persons with Developmental Disabilities | location = Alexandria, VA | publisher = National Association of State Mental Retardation Program Directors, Incorporated (NASMRPD) }}</ref><ref>{{cite book | vauthors = Allard M | date = 1996 | chapter = Supported living policies and programs in the USA. | veditors = Mansell J, Ericsson K | title = Deinstitutionalization and Community Living | pages = 98–16 | location = London | publisher = Chapman & Hall | isbn = 978-0-412-57010-0 }}</ref> new models in supportive housing (or even more sophisticated housing and health),<ref name="pmid8509074">{{cite journal | vauthors = Carling PJ | title = Housing and supports for persons with mental illness: emerging approaches to research and practice | journal = Hospital & Community Psychiatry | volume = 44 | issue = 5 | pages = 439–49 | date = May 1993 | pmid = 8509074 | doi = 10.1176/ps.44.5.439 }}</ref> and creative plans permeating the literature on independent living, user-directed categories (approved by US Centers for Medicaid and Medicare), expansion of home services and family support, and assisted living facilities for the aging groups. These services often have undergone a revolution in payment schemes beginning with systems for payment of valued community options.<ref>{{cite report | vauthors = Smith G, Alderman S | date = 1987 | title = Paying for Community Services | location = Alexandria, VA | publisher = National Association of State Mental Retardation Program Directors }}</ref><ref>{{cite book | vauthors = Fox HB, Wicks LB | date = 1995 | chapter = Financing care coordination services under Medicaid | veditors = Friesen BJ, Poertner J | title = From Case Management to Service Coordination for Children with Emotional, Behavioral, or Mental Disorders | pages = 95–132 | location = Baltimore, MD | publisher = Paul H. Brookes Publishing Company }}</ref><ref>{{cite report | publisher = National Council on Disability | date = 2005 | title = The State of 21st Century Long Term Services and Supports: Financing and Systems Reform for Americans with Disabilities | location = Washington, DC }}</ref><ref>{{cite book | vauthors = Stancliffe RJ, Lakin KC | date = 2005 | title = Costs and Outcomes of Community Services for People with Intellectual Disabilities | location = Baltimore, MD | publisher = Paul H. Brookes Publishing Company | isbn = 978-1-55766-718-2 }}</ref> then termed evidence-based practices.

'''Interventions for preventing delirium in older people in institutional long-term care'''

The current evidence suggests that software-based interventions to identify medications that could contribute to delirium risk and recommend a pharmacist's medication review probably reduces incidence of delirium in older adults in long-term care.<ref>{{cite journal | vauthors = Woodhouse R, Burton JK, Rana N, Pang YL, Lister JE, Siddiqi N | title = Interventions for preventing delirium in older people in institutional long-term care | journal = The Cochrane Database of Systematic Reviews | volume = 4 | article-number = CD009537 | date = April 2019 | issue = 4 | pmid = 31012953 | pmc = 6478111 | doi = 10.1002/14651858.cd009537.pub3 }}</ref> The benefits of hydration reminders and education on risk factors and care homes' solutions for reducing delirium is still uncertain.

'''Physical rehabilitation for older people in long-term care'''

Physical rehabilitation can prevent deterioration in health and activities of daily living among care home residents. The current evidence suggests benefits to physical health from participating in different types of physical rehabilitation to improve daily living, strength, flexibility, balance, mood, memory, exercise tolerance, fear of falling, injuries, and death.<ref name=":22">{{cite journal | vauthors = Crocker T, Forster A, Young J, Brown L, Ozer S, Smith J, Green J, Hardy J, Burns E, Glidewell E, Greenwood DC | display-authors = 6 | title = Physical rehabilitation for older people in long-term care | journal = The Cochrane Database of Systematic Reviews | issue = 2 | article-number = CD004294 | date = February 2013 | pmid = 23450551 | doi = 10.1002/14651858.cd004294.pub3 | pmc = 11930398 | hdl = 11250/2444982 | hdl-access = free }}</ref> It may be both safe and effective in improving physical and possibly mental state, while reducing disability with few adverse events.<ref name=":22" />

The current body of evidence suggests that physical rehabilitation may be effective for long-term care residents in reducing disability with few adverse events.<ref name=":16">{{cite journal | vauthors = Crocker T, Forster A, Young J, Brown L, Ozer S, Smith J, Green J, Hardy J, Burns E, Glidewell E, Greenwood DC | display-authors = 6 | title = Physical rehabilitation for older people in long-term care | journal = The Cochrane Database of Systematic Reviews | issue = 2 | article-number = CD004294 | date = February 2013 | pmid = 23450551 | doi = 10.1002/14651858.CD004294.pub3 | pmc = 11930398 | collaboration = Cochrane Stroke Group | hdl = 11250/2444982 | hdl-access = free }}</ref> However, there is insufficient to conclude whether the beneficial effects are sustainable and cost-effective.<ref name=":16" /> The findings are based on moderate quality evidence.

==Demand for long-term care== [[File:Nursing home corridor.JPG|thumb|Nurse at a nursing home in Norway]] Life expectancy is going up in most countries, meaning more people are living longer and entering an age when they may need care. Meanwhile, birth rates are generally falling. Globally, 70 percent of all older people now live in low or middle-income countries.<ref>{{cite web | work = World Health Organization | url = https://www.who.int/ageing/en/ | title = Ageing and Life Course | access-date = 3 January 2012 }}</ref> Countries and health care systems need to find innovative and sustainable ways to cope with the demographic shift. As reported by John Beard, director of the World Health Organization's Department of Ageing and Life Course, "With the rapid ageing of populations, finding the right model for long-term care becomes more and more urgent."<ref name="WHO Bulletin"/>

The demographic shift is also being accompanied by changing social patterns, including smaller families, different residential patterns, and increased female labour force participation. These factors often contribute to an increased need for paid care.<ref>{{cite journal | vauthors = Merkur S, McDaid D, Maresso A | publisher = London School of Economics and Political Science. | url = http://www.euro.who.int/__data/assets/pdf_file/0018/150246/Eurohealth-Vol17-No-2-3-Web.pdf | title = Ageing and long-term care. | volume = 17 | issue = 2–3 | date = 2011 | journal = Eurohealth }}</ref>

In many countries, the largest percentages of older persons needing LTC services still rely on informal home care, or services provided by unpaid caregivers (usually nonprofessional family members, friends or other volunteers). Estimates from the OECD of these figures often are in the 80 to 90 percent range; for example, in Austria, 80 percent of all older citizens.<ref>{{citation|author=OECD|year=2005|title=Long Term Care for Older People|location=Paris|publisher=OECD}}</ref> The similar figure for dependent elders in Spain is 82.2 percent.<ref>{{cite journal | vauthors = Costa-Font J, Patxot C | title = The design of the long-term care system in Spain: Policy and financial constraints. | journal = Social Policy and Society | date = January 2005 | volume = 4 | issue = 1 | pages = 11–20 | doi = 10.1017/S1474746404002131 | s2cid = 154439579 }}</ref>

The US Centers for Medicare and Medicaid Services estimates that about 9 million American men and women over the age of 65 needed long-term care in 2006, with the number expected to jump to 27 million by 2050.<ref>{{cite web|title=Growing Demand for Long-Term Care in the U.S. (Updated)|url=http://www.thescanfoundation.org/sites/default/files/us_growing_demand_for_ltc_june_2012_fs.pdf|publisher=The Scan Foundation|access-date=16 October 2015}}</ref> It is anticipated that most will be cared for at home; family and friends are the sole caregivers for 70 percent of the elderly. A study by the U.S. Department of Health and Human Services says that four out of every ten people who reach age 65 will enter a nursing home at some point in their lives.<ref>{{cite web | work = U.S. Department of Health and Human Services | url = http://ahrq.hhs.gov/research/longtrm1.htm | title = AHCPR Research on Long-term Care | archive-url = https://web.archive.org/web/20090714102623/http://ahrq.hhs.gov/research/longtrm1.htm | archive-date=2009-07-14 }}</ref> Roughly 10 percent of the people who enter a nursing home will stay there five years or more.<ref>{{cite web|title=Long Term Care|url=https://www.senioranswers.org/insurance/long-term-care/|publisher=Colorado Gerontological Society|access-date=16 October 2015}}</ref>

Based on projections of needs in long-term care (LTC), the US 1980s demonstrations of versions of Nursing Homes Without Walls (Senator Lombardi of New York) for elders in the US were popular, but limited: On LOK, PACE, Channeling, Section 222 Homemaker, ACCESS Medicaid-Medicare, and new Social Day Care. The major argument for the new services was cost savings based upon reduction of institutionalization.<ref>{{cite journal | vauthors = Weissert WG, Cready CW, Pawelak JE |title=The Past and Future of Home- and Community-Based Long-Term Care: Home- and Community-Based Long-Term Care |journal=Milbank Quarterly |date=December 2005 |volume=83 |issue=4 |pages=10.1111/j.1468–0009.2005.00434.x | pmc = 2690259 |doi=10.1111/j.1468-0009.2005.00434.x}}</ref> The demonstrations were significant in developing and integrating personal care, transportation, homemaking/meals, nursing/medical, emotional support, help with finances, and informal caregiving. Weasart concluded that: "Increased life satisfaction appears to be relatively consistent benefit of community care" and that a "prospective budgeting model" of home and community-based long-term care (LTC) used "break-even costs" to prevent institutional care.

==Long-term care costs== A recent analysis indicates that Americans spent $219.9 billion on long-term care services for the elderly in 2012.<ref>{{cite web | vauthors = O'Shaughnessy CV | work = National Health Policy Forum | date = 27 March 2014 | title = The Basics: National Spending for Long-Term Services and Supports. | access-date = 1 January 2015 | url = https://www.nhpf.org/library/the-basics/Basics_LTSS_03-27-14.pdf | publisher = George Washington University | location = Washington, D.C. }}</ref> Nursing home spending accounts for the majority of long-term care expenditures, but the proportion of home and community based care expenditures has increased over the past 25 years.<ref>{{cite book | vauthors = Stone RI, Benson WF | chapter = Financing and organizing health and long term care services. | veditors = Prohaska TR, Anderson LA, Binstock RH | date = 2012 | title = Public Health for an Aging Society. | location = Boston | publisher = Johns Hopkins University Press | isbn = 978-1-4214-0535-3 }}</ref> The US federal-state-local government systems have supported the creation of modernized health care options, though new intergovernmental barriers continue to exist.<ref>{{cite book | vauthors = Boris E, Klein J | date = 2012 | title = Caring for America: Home Health Workers in the Shadow of the Welfare State | location = New York, NY | publisher = Oxford University Press }}</ref><ref>{{cite book | vauthors = Seekins T, Katz R, Ravesloot C | date = March 2008 | chapter = Nursing home emancipation: Accomplishments of urban and rural centers for independent living. | title = Rural Disability and Rehabilitation: Research Progress Report #39 | location = Missoula, MT | publisher = Rehabilitation Research and Training Center on Community Living }}</ref>

The Medicaid and Medicare health care systems in the US are relatively young, celebrating 50 years in 2015. According to the ''Health Care Financing Review'' (Fall 2000), its history includes a 1967 expansion of to ensure primary and preventive services to Medicaid-eligible children (EPSDT), the use home and community-based Medicaid waivers (then HCBS services), Clinton administration health care demonstrations (under 1115 waiver authority), the new era of SCHIP to cover uninsured children and families, coverage for the HIV/AIDS population groups, and attention to ethnic and racial-based service delivery (e.g., beneficiaries). Later, managed care plans which used "intensive residential children's" options and "non-traditional out-patients services (school-based services, partial hospitalization, in-home treatment and case management) developed "behavioral health care plans".<ref name="pmid15776699">{{cite journal | vauthors = Cook JA, Fitzgibbon G, Burke-Miller J, Mulkern V, Grey DD, Heflinger CA, Paulson R, Hoven CW, Stein-Seroussi A, Kelleher K | display-authors = 6 | title = Medicaid behavioral health care plan satisfaction and children's service utilization | journal = Health Care Financing Review | volume = 26 | issue = 1 | pages = 43–55 | date = 2004 | pmid = 15776699 | pmc = 4194880 | doi = }}</ref>

In 2019, the average annual cost of nursing home care in the United States was $102,200 for a private room. The average annual cost for assisted living was $48,612. Home health care, based on a 44 average week, cost $52,654 a year <ref>{{cite web | title = Cost of Care Survey | url = https://www.genworth.com/aging-and-you/finances/cost-of-care.html | publisher = Genworth Financial, Inc. }}</ref> Genworth 2019 Cost of Care Survey]. The average cost of a nursing home for one year is more than the typical family has saved for retirement in a 401(k) or an IRA.<ref name = "Gale_2004" /> As of 2014, 26 states have contracts with managed care organizations (MCO) to deliver long-term care for the elderly and individuals with disabilities. The states pay a monthly capitated rate per member to the MCOs that provide comprehensive care and accept the risk of managing total costs.<ref>{{cite web |publisher=Agency for Healthcare Research and Quality |url=https://innovations.ahrq.gov/perspectives/states-turn-managed-care-constrain-medicaid-long-term-care-costs |title=States Turn to Managed Care To Constrain Medicaid Long-Term Care Costs |date=2014-04-09 | access-date=2014-04-14}}</ref>

When the percentage of elderly individuals in the population rises to nearly 14% in 2040 as predicted, a huge strain will be put on caregivers' finances as well as continuing care retirement facilities and nursing homes because demand will increase dramatically.<ref>{{cite web | vauthors = Waters R | date = 20 July 2009 | title = Elderly to Double to 14% of Global Population by 2040. | website = Bloomberg News | url = https://www.bloomberg.com/apps/news?pid=newsarchive&sid=axV6K65QoAg8 }}</ref> New options for elders during the era of choice expansion (e.g., seniors helping seniors, home companions), which includes limitations on physician choices, assisted living facilities, retirement communities with disability access indicators, and new "aging in place" plans (e.g., aging in a group home, or "transfer" to a home or support services with siblings upon parents' deaths-intellectual and developmental disabilities).

Politically, the 21st Century has shifted to the cost of unpaid family caregiving (valued by AARP in aging at $450 billion in 2009), and the governments in the US are being asked to "foot part of the bill or costs" of caregiving for family members in home. This movement, based in part on feminist trends in the workplace, has intersected with other hospital to home, home health care and visiting nurses, user-directed services, and even hospice care. The government's Medicaid programs is considered the primary payer of ''Long Term Services and Supports'' (LTSS), according to the American Association of Retired Persons, Public Policy Institute.<ref>{{cite report | vauthors = Houser A, Ujavri K, Fox-Grange W | date = September 2012 | title = In Brief #INB 198 | location = Washington, DC | publisher = AARP Public Policy Institute }}</ref> New trends in family support and family caregiving also affect diverse disability population groups, including the very young children and young adults,<ref>{{cite book | vauthors = Singer G, Siegel D, Conway P | date = 2012 | title = Family Support and Family Caregiving Across Disabilities | location = Baltimore, MD | publisher = Paul H. Brookes Publishing Company | isbn = 978-1-317-97912-8 }}</ref> and are expected to be high increases in Alzheimer's due to longevity past age 85.

==Long-term care funding== Governments around the world have responded to growing long-term care needs to different degrees and at different levels. These responses by governments, are based in part, upon a public policy research agenda on long-term care which includes special population research, flexible models of services, and managed care models to control escalating costs and high private pay rates.<ref>{{cite journal | vauthors = Binstock R, Spector W | title = Five Priority Areas for Research on Long-Term Care | journal = Health Services Research | year = 1997 | volume = 32 | issue = 5 | pages = 715–730 | location = Washington, DC | publisher = Agency for Health Care Policy and Research | pmid = 9402911 | pmc = 1070225 }}</ref><ref name="pmid10133709">{{cite journal | vauthors = Miller ME, Gengler DJ | title = Medicaid case management: Kentucky's Patient Access and Care Program | journal = Health Care Financing Review | volume = 15 | issue = 1 | pages = 55–69 | date = 1993 | pmid = 10133709 | pmc = 4193407 | doi = | url = }}</ref><ref name="pmid10387426">{{cite journal | vauthors = Fox HB, McManus MA, Almeida RA | title = Managed care's impact on Medicaid financing for early intervention services | journal = Health Care Financing Review | volume = 20 | issue = 1 | pages = 59–72 | date = 1998 | pmid = 10387426 | pmc = 4194536 | doi = | url = }}</ref><ref>{{cite journal | vauthors = Langman-Dorwart N, Peebles T | title = A comprehensive approach to managed care for mental health. | journal = Administration in Mental Health | date = June 1988 | volume = 15 | issue = 4 | pages = 226–35 | doi = 10.1007/BF00818723 | s2cid = 23831996 | url = https://link.springer.com/article/10.1007/BF00818723 | url-access = subscription }}</ref><ref>{{cite book | vauthors = Rappaport MB | date = 2000 | title = Remodeling Home Care: Making the Transition from Fee-for Service to Managed Care | location = New York, NY and London | publisher = Garland Publishing Co. | isbn = 978-0-8153-3440-8 }}</ref>

===Europe=== Most Western European countries have put in place a mechanism to fund formal care and, in a number of Northern and Continental European countries, arrangements exist to at least partially fund informal care as well. Some countries have had publicly organized funding arrangements in place for many years: the Netherlands adopted the Exceptional Medical Expenses Act (ABWZ) in 1967, and in 1988 Norway established a framework for municipal payments to informal caregivers (in certain instances making them municipal employees). Other countries have only recently put in place comprehensive national programs: in 2004, for example, France set up a specific insurance fund for dependent older people and in 2006, Portugal created a public funded national network for long-term care. Some countries (Spain and Italy in Southern Europe, Poland and Hungary in Central Europe) have not yet established comprehensive national programs, relying on informal caregivers combined with a fragmented mix of formal services that varies in quality and by location.<ref name="Saltman">{{cite journal | vauthors = Saltman RB, Dubois HF, Chawla M | title = The impact of aging on long-term care in Europe and some potential policy responses | journal = International Journal of Health Services | volume = 36 | issue = 4 | pages = 719–46 | date = 2006 | pmid = 17175843 | doi = 10.2190/AUL1-4LAM-4VNB-3YH0 | s2cid = 45396303 }}</ref>

In the 1980s, some Nordic countries began making payments to informal caregivers, with Norway and Denmark allowing relatives and neighbors who were providing regular home care to become municipal employees, complete with regular pension benefits. In Finland, informal caregivers received a fixed fee from municipalities as well as pension payments. In the 1990s, a number of countries with social health insurance (Austria in 1994, Germany in 1996, Luxembourg in 1999) began providing a cash payment to service recipients, who could then use those funds to pay informal caregivers.<ref name="Saltman"/>

In Germany, funding for long-term care is covered through a mandatory insurance scheme (or ''Pflegeversicherung''), with contributions divided equally between the insured and their employers. The scheme covers the care needs of people who as a consequence of illness or disability are unable to live independently for a period of at least six months. Most beneficiaries stay at home (69%).<ref name="WHO Bulletin"/> The country's LTC fund may also make pension contributions if an informal caregiver works more than 14 hours per week.<ref name="Saltman"/>

Major reform initiatives in health care systems in Europe are based, in part on an extension of user-directed services demonstrations and approvals in the US (e.g., Cash and counseling demonstrations and evaluations).<ref name="pmid17244289">{{cite journal | vauthors = Doty P, Mahoney KJ, Simon-Rusinowitz L | title = Designing the Cash and Counseling Demonstration and Evaluation | journal = Health Services Research | volume = 42 | issue = 1 Pt 2 | pages = 378–96 | date = February 2007 | pmid = 17244289 | pmc = 1955334 | doi = 10.1111/j.1475-6773.2006.00678.x }}</ref><ref>{{cite book | vauthors = Racino J | date = 2014 | chapter = Individual and public budgeting. | title = Public Administration and Disability: Community Services Administration in the US | pages = 209–234 | location = London, New York, NY and Boca Raton, FL | publisher = Francis and Taylor |isbn=978-0-429-25451-2 }}</ref> Clare Ungerson, a professor of Social Policy, together with Susan Yeandle, Professor of Sociology, reported on the Cash for Care Demonstrations in Nation-States in Europe (Austria, France, Italy, Netherlands, England, Germany) with a comparative USA ("paradigm of home and community care").<ref>{{cite book | vauthors = Ungerson C, Yeandle S | date = 2007 | title = Cash for Care in Developed Welfare States | location = New York, NY | publisher = Palgrave MacMillan | isbn = 978-1-4039-3552-6 }}</ref><ref>{{cite book | vauthors = Keigher S | date = 2007 | chapter = Consumer-direction in an "Ownership Society": An Emerging Paradigm for Home and Community Care in the United States. | veditors = Ungerson C, Yeandle S | title = Cash for Care in Developed Welfare States | pages = 187–206 | location = New York, NY | publisher = Palgrave MacMillan | isbn = 978-1-4039-3552-6 }}</ref>

In addition, direct payment schemes were developed and implemented in the UK, including in Scotland,<ref>{{cite book | vauthors = Pearson C | date = 2006 | chapter = Direct payments in Scotland. | veditors = Leece J, Bornat J | title = Development in Direct Payments | pages = 33–48 | location = Bristol, UK | publisher = Polity Press, University of Bristol | isbn = 978-1-86134-654-4 }}</ref> for parents with children with disabilities and people with mental health problems. These "health care schemes" on the commodification of care were compared to individualised planning and direct funding in the US and Canada.<ref>{{cite book | vauthors = Hutchinson P, Lord J, Salisbury B | date = 2006 | chapter = North American approaches to individualised planning and direct funding. | veditors = Leece J, Bornat J | title = Developments in Direct Payments | pages = 49–63 | location = Bristol, UK | publisher = Polity Press, University of Bristol | isbn = 978-1-86134-654-4 }}</ref>

===North America===

====Canada==== In Canada, facility-based long-term care is not publicly insured under the Canada Health Act in the same way as hospital and physician services. Funding for LTC facilities is governed by the provinces and territories, which varies across the country in terms of the range of services offered and the cost coverage.<ref name="Health Canada"/> In Canada, from April 1, 2013, to March 31, 2014, there were 1,519 long-term care facilities housing 149,488 residents.<ref>{{cite web|title = The Daily — Long-term Care Facilities Survey, 2013|url = http://www.statcan.gc.ca/daily-quotidien/150504/dq150504b-eng.htm|website = www.statcan.gc.ca|access-date = 2016-01-19|first = Government of Canada, Statistics|last = Canada|date = 4 May 2015}}</ref>

Canada-US have a long-term relationship as border neighbors on health care; however, Canada, has a national health care system in which providers remain in private practice but payment is covered by taxpayers, instead of individuals or numerous commercial insurance companies. In the development of home and community-based services, individualised services and supports were popular in both Nations.<ref>{{cite journal | vauthors = Lord J, Hutchison P | title = Individualised support and funding: building blocks for capacity building and inclusion. | journal = Disability & Society | date = January 2003 | volume = 18 | issue = 1 | pages = 71–86 | doi = 10.1080/713662196 | s2cid = 55818975 }}</ref> The Canadian citations of US projects included the cash assistance programs in family support in the US, in the context of individual and family support services for children with significant needs. In contrast, the US initiatives in health care in that period involved the Medicaid waiver authority and health care demonstrations, and the use of state demonstration funds separate from the federal programs.<ref>{{cite book | vauthors = Taylor S, Bogdan R, Racino J | date = 1991 | title = Life in the Community: Case Studies of Organizations Supporting People with Disabilities in the Community | location = Baltimore, MD | publisher = Paul H. Brookes | isbn = 978-1-55766-072-5 }}</ref><ref>{{cite book | vauthors = Braddock D, Hemp R, Fujiura G, Bachelder L, Mitchell D | date = 1990 | title = The State of the States in Developmental Disabilities | location = Baltimore, MD | publisher = Paul H. Brookes Publishing Company | isbn = 978-0-9965068-7-8 }}</ref>

====United States==== Long-term care is typically funded using a combination of sources including but not limited to family members, Medicaid, long-term care insurance and Medicare. All of these include out-of-pocket spending, which often becomes exhausted once an individual requires more medical attention throughout the aging process and might need in-home care or be admitted into a nursing home. For many people, out-of-pocket spending for long-term care is a transitional state before eventually being covered by Medicaid, which requires impoverishment for eligibility.<ref name = "Gale_2004">{{cite report | vauthors = Gale WG, Iwry M, Orszag P, Ahlstrom A, Clements E, Lambrew J, Tumlinson A | title = Retirement Saving and Long-Term Care Needs: An Overview. | work = The Retirement Security Project | publisher = George Washington University | date = September 2004 }}</ref> Personal savings can be difficult to manage and budget and often deplete rapidly. In addition to personal savings, individuals can also rely on an Individual retirement account, Roth IRA, Pension, Severance package or the funds of family members. These are essentially retirement packages that become available to the individual once certain requirements have been met.

In 2008, Medicaid and Medicare accounted for approximately 71% of national long-term care spending in the United States.<ref>{{citation|author=Lewin Group|year=2010|title=Individuals living in the community with chronic conditions and functional limitations: A closer look. Report prepared under contract #HHS-100-95-0046 for the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation}}</ref> Out-of-pocket spending accounted for 18% of national long-term care spending, private long-term care insurance accounted for 7%, and other organizations and agencies accounted for the remaining expenses. Moreover, 67% of all nursing home residents used Medicaid as their primary source of payment.<ref>{{cite book | vauthors = Gregory SR, Gibson MJ | date = 2002 | title = Across the States: Profiles of Long-Term Services and Supports | edition = 5th | location = Washington, DC | publisher = AARP Public Policy Institute }}</ref>

Private Long-Term Care Insurance in 2017 paid over $9.2 Billion in benefits and claims for these policies continue to grow.<ref>{{cite web | vauthors = Kople L | date = 22 January 2018 |url= https://www.ltcnews.com/articles/long-term-care-insurance-industry-paid-huge-amount-of-benefits-in-2017 |title= Long-Term Care Insurance Industry Paid Huge Benefits in 2017 |website=LTC News}}</ref> The largest claim to one person is reported to be over $2 million in benefits <ref>{{cite web|url=https://www.expertclick.com/NewsRelease/Largest-LongTerm-Care-Insurance-Claim-Being-Paid-Exceeds-2-Million,2018156809.aspx|title=Largest Long-Term Care Insurance Claim Being Paid Exceeds $2 Million|website=www.expertclick.com}}</ref>

Medicaid is one of the dominant players in the nation's long-term care market because there is a failure of private insurance and Medicare to pay for expensive long-term care services, such as nursing homes. For instance, 34% of Medicaid was spent on long-term care services in 2002.<ref>{{cite report | vauthors = O'Brien E, Elias R | title = Kaiser commission on Medicaid and the uninsured. Medicaid and Long-Term Care | date = May 2004 | publisher = Kaiser Commission on Medicaid and the Uninsured, Henry J. Kaiser Family Foundation. }}</ref>

Medicaid operates as distinct programs which involve home and community-based (Medicaid) waivers designed for special population groups during deinstitutionalization then to community, direct medical services for individuals who meet low income guidelines (held stable with the Affordable Care Act Health Care Exchanges), facility development programs (e.g., intermediate care facilities for individuals with intellectual and developmental disabilities), and additional reimbursements for specified services or beds in facilities (e.g., over 63% beds in nursing facilities). Medicaid also fund traditional home health services and is payor of adult day care services. Currently, the US Centers for Medicaid and Medicare also have a user-directed option of services previously part of grey market industry.

In the US, Medicaid is a government program that will pay for certain health services and nursing home care for older people (once their assets are depleted). In most states, Medicaid also pays for some long-term care services at home and in the community. Eligibility and covered services vary from state to state. Most often, eligibility is based on income and personal resources. Individuals eligible for Medicaid are eligible for community services, such as home health, but governments have not adequately funded this option for elders who wish to remain in their homes after extended illness aging in place, and Medicaid's expenses are primarily concentrated on nursing home care operated by the hospital-nursing industry in the US.<ref name="pmid12004582">{{cite journal | vauthors = Mulvey J, Li A | title = Long-term care financing: options for the future | journal = Benefits Quarterly | volume = 18 | issue = 2 | pages = 7–14 | date = 2002 | pmid = 12004582 | doi = | url = }}</ref>

Generally, Medicare does not pay for long-term care. Medicare pays only for medically necessary skilled nursing facility or home health care. However, certain conditions must be met for Medicare to pay for even those types of care. The services must be ordered by a doctor and tend to be rehabilitative in nature. Medicare specifically will not pay for custodial and non-skilled care. Medicare will typically cover only 100 skilled nursing days following a 3-day admission to a hospital.

A 2006 study conducted by AARP found that most Americans are unaware of the costs associated with long-term care and overestimate the amount that government programs such as Medicare will pay.<ref>{{cite web | date = 13 December 2006 | work = AARP Press Center | url = http://www.aarp.org/research/press-center/presscurrentnews/long_term_care_report.html | archive-url = https://web.archive.org/web/20070927010818/http://www.aarp.org/research/press-center/presscurrentnews/long_term_care_report.html | archive-date = 27 September 2007 | title = Long-term care report }}</ref> The US government plans for individuals to have care from family, similar to Depression days; however, AARP reports annually on the Long-term services and supports (LTSS) <ref>{{cite web | vauthors = Hado E, Komisar H | date = August 2019 | url = https://www.aarp.org/content/dam/aarp/ppi/2019/08/long-term-services-and-supports.doi.10.26419-2Fppi.00079.001.pdf | work = AARP | title = Long-Term Services and Supports in the US | location = Washington, DC }}</ref> for aging in the US including home-delivered meals (from senior center sites) and its advocacy for caregiving payments to family caregivers.

Long-term care insurance protects individuals from asset depletion and includes a range of benefits with varying lengths of time. This type of insurance is designed to protect policyholders from the costs of long-term care services, and policies are determined using an "experience rating" and charge higher premiums for higher-risk individuals who have a greater chance of becoming ill.<ref name="pmid9839257">{{cite journal | vauthors = Amaradio L | title = Financing long-term care for elderly persons: what are the options? | journal = Journal of Health Care Finance | volume = 25 | issue = 2 | pages = 75–84 | date = 1998 | pmid = 9839257 | doi = | url = }}</ref>

There are now [https://ltcsantacruz.com/long-term-care-insurance/ a number of different types of long-term care insurance plans] including traditional tax-qualified, partnership plans (providing additional dollar-for-dollar asset protect offered by most states), short-term extended care policies and hybrid plans (life or annuity policies with riders to pay for long-term care).<ref>{{cite web | vauthors = Kelly J | date = 31 January 2017 |url=https://www.ltcnews.com/articles/new-ltc-policy-options-available-hybrid-long-term-care-and-short-term-care|title=Hybrid Long-Term Care and Short-Term Care|website=LTC News}}</ref>

Residents of LTC facilities may have certain legal rights, including a Red Cross ombudsperson, depending on the location of the facility.<ref>{{cite web|title=Requirements for States and Long Term Care Facilities|url=http://www.ecfr.gov/cgi-bin/text-idx?SID=6d9e785c91c433571919f9827481b19d&node=42:5.0.1.1.2&rgn=div5#42:5.0.1.1.2.2.7.1|work=ELECTRONIC CODE OF FEDERAL REGULATIONS|publisher=U.S. Government Printing Office|access-date=15 May 2014}}</ref>

Unfortunately, government funded aid meant for long-term care recipients are sometimes misused. ''The New York Times'' explains how some of the businesses offering long-term care are misusing the loopholes in the newly redesigned New York Medicaid program.<ref>{{cite news| vauthors = Bernstein N |title=Medicaid Shift Fuels Rush for Profitable Clients|url=https://www.nytimes.com/2014/05/09/nyregion/medicaid-shift-fuels-rush-for-profitable-clients.html?_r=0|access-date=15 May 2014|newspaper=The New York Times|date=8 May 2014}}</ref> Government resists progressive oversight which involves continuing education requirements, community services administration with quality-of-life indicators, evidence-based services, and leadership in use of federal and state funds for the benefit of individual and their family.

For those that are poor and elderly, long-term care becomes even more challenging. Often, these individuals are categorized as "dual eligibles" and they qualify for both Medicare and Medicaid. These individuals accounted for 319.5 billion in health care spending in 2011.<ref name=":0">{{cite journal | vauthors = Meyer H | title = The coming experiments in integrating and coordinating care for 'dual eligibles' | journal = Health Affairs | volume = 31 | issue = 6 | pages = 1151–5 | date = June 2012 | pmid = 22665826 | doi = 10.1377/hlthaff.2012.0505 | doi-access = free }}</ref>

== References == {{Reflist|2}}

== External links == {{Commons category}} *[http://www.rureadyca.org/ California Partnership for Long-Term Care] *[https://web.archive.org/web/20120601025016/http://www.payingforcare.co.uk/cost-of-care-calculator Cost of care calculator for UK residents] *[http://www.aaltci.org/ American Association for Long Term Care Insurance]

{{DEFAULTSORT:Long Term Care}} Category:Health care Category:Elderly care Category:Caregiving Category:Medical terminology Category:Medicare and Medicaid (United States)