The Financial Costs of Family Caregiving: A Stark Reality

Families and close friends are the most important source of support to older people and adults with a chronic, disabling or serious health condition. They already take personal responsibility for providing increasingly complex care to the tune of $470 billion (as of 2013). That figure, representing family caregivers’ unpaid contribution in dollars, roughly equals the combined sales of the four largest U.S. tech companies (Apple, IBM, Hewlett Packard and Microsoft, $469 billion) in 2013. The out-of-pocket hit Caregiving families feel …

High Anxiety: Paying for the Costs of Care

My almost 96-year-old mother is one of about half of older adults with disabilities serious enough to need long-term services and supports. She is nearly blind, has dementia and osteoporosis, and suffers from arthritis. Recently she’s begun to experience back pain too. She lived in her home of over 50 years until it was damaged during Hurricane Sandy. For the past four years she has been living in an assisted living facility in New Jersey, in the community she prefers. …

Changing the Way We Look at Families Caring for an Aging America

While family caregiving is an intensely personal issue, it is critically important to the well-being of our aging U.S. population, families and society — and must be taken seriously as a critical issue of public policy. That’s according to a recent report on family caregiving for older adults from the National Academies of Sciences, Engineering, and Medicine. The report, developed and authored by a 19-member expert committee of which I was a member, highlights the shortcoming of both the health …

Consumer Voices Matter: Meaningful Engagement of Consumers and Caregivers in Long-Term Care

Patient-centered care is responsive to the needs and values of the individuals receiving care, and is one aspect of a high-performing, high-quality health care system. The Centers for Medicare & Medicaid Services (CMS) recently issued a final rule that gives Medicaid managed care consumers and their family caregivers a seat at the table by requiring states to include consumer and family caregiver perspectives in the design, implementation and oversight of state-managed long-term services and supports (LTSS) programs. States should view the new …

Are We There Yet? Efforts to Balance Long-Term Services and Supports

“Marvin L. Dawkins was a 53-year-old AT&T manager when a blocked blood vessel left him paralyzed. It took 11 years, one lawsuit, repeated tangles over Medicaid rules — and a chance meeting on a church van — before he could extract himself from a nursing home outside Baltimore. Now he lives in an apartment with the assistance of an aide, gets out for a job that he says gives him purpose, socializes with new friends and old ones, and revels …

Gaining New Ground: Solutions for Financing Long-Term Services & Supports

There is little dispute that the cost of long-term services and supports (LTSS) is daunting. The typical cost for care in a nursing home is about $91,250 a year, and the average annual base price for assisted living is $43,200. Few people can accumulate sufficient savings, even over a lifetime, to cover the costs. Most people rely on their families and friends for the bulk of their LTSS needs. Yet, family caregivers cannot do it all, and in the future, …