Guest blog: Long-term care and support- how does it work in the US?

Older woman with carer

Age UK has been sharing a series of guest blogs with the AARP Public Policy Institute. Our latest post comes from Donald L. Redfoot, Senior Strategic Policy Advisor. AARP is a nonprofit, nonpartisan organisation, with a membership of more than 37 million older people across the USA.

Even experts find it challenging to understand the United States’ fragmented system of providing long-term services and supports (LTSS) to older adults and people with disabilities. Those who need services are often utterly baffled. The following discussion is designed to help international observers comprehend US public policies designed to support people with LTSS needs.

LTSS as a personal and family responsibility

In the absence of universal, social insurance in the US, responsibility for providing and paying for LTSS has fallen to individuals and their families. However, less than 10 percent of adults have private long-term care insurance, and sales have been diminishing as private insurers exit the market and raise premiums. The overwhelming majority of supports to people with disabilities are unpaid, provided by family caregivers (carers).

Based on 2009 survey data, AARP’s Public Policy Institute estimated that the cost of replacing family care with paid care would have been $450 billion. By way of comparison, the total of paid LTSS measured that year was less than half that amount ($209 billion). Looking to the future, reliance on family caregivers will be increasingly difficult because of declines in birth rates and changes in family structures.

Public programs to finance LTSS

2015 marks the 50th anniversary of three important federal programs that affect LTSS for people with disabilities: Medicare, Medicaid, and the Older Americans Act.

  • Medicare is a social insurance program to address the healthcare needs of older people and those with long-term disabilities. Medicare does not fund LTSS, but it does fund home healthcare or care in a skilled nursing facility in conjunction with an acute care episode – sometimes as a transition to LTSS. Total Medicare spending was $492 billion in fiscal year 2013, of which 8 per cent went to skilled nursing facility care and home healthcare.
  • Medicaid is a welfare program with shared responsibilities for funding and administration between the federal government and states. The program pays for healthcare and LTSS for those who are poor, including those who have impoverished themselves by spending down their resources on health-related needs. Originally, Medicaid paid only for nursing home services, largely as a way to shorten hospital stays. But the percentage of Medicaid LTSS spending for home and community-based services (HCBS) more than doubled between 1995 and 2011 – from 20 per cent to 45 per cent – though this percentage varies enormously from state to state. Rebalancing to more HCBS has been more successful among younger people with disabilities, only 21 per cent of whom received institutional services compared to half of older beneficiaries. Total spending on Medicaid was $454 billion in fiscal year 2013, of which $123 billion was for LTSS.
  • The Older Americans Act provides grants to states to fund a network of area agencies on ageing at the local level that provide essential community-based services to promote the independence of those ages 60 and older – services such as information and referral, home-delivered meals, transportation, and support for family caregivers. The program is not an “entitlement” like Medicare and Medicaid where anyone who meets the eligibility criteria can receive services. Rather, the program relies on annual appropriations from Congress as part of the “discretionary” budget. As a result of budget tightening, grants to states totalled only $1.3 billion in fiscal year 2014. With funding essentially frozen for the past decade, the ability to fund services has severely eroded.

In short, the US system is fragmented between public and private responsibility, between federal and state levels of government, and among various health, personal care, and social services needed to support the independence of people with disabilities of all ages. Discussions are underway among various stakeholder organizations, including AARP, to find new solutions that address these problems. But the political consensus needed to enact fundamental reforms has been elusive.

Read consumer advice about care and support on the Age UK website 

Find out more about Age UK’s Care in Crisis campaign 

Author: Age UK

Age UK is dedicated to helping everyone make the most of later life. In the UK we help more than 7 million older people each year by providing advice, combating loneliness and enabling independence. Locally, we work as part of a network of independent charities which includes Age UK, Age Cymru, Age NI and Age Scotland and over 150 local Age UK partners in England and Wales.

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