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High Anxiety: Paying for the Costs of Care

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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. Here’s a little of what the experience of my mother — and my family — reveals about the cost of care for older adults with health and self-care needs.

Long-term services and supports are expensive.

The high cost of long-term services and supports (LTSS) — also called long-term care — is a major worry and source of high anxiety for people with chronic care needs or disabilities and their families. My two sisters and I struggle with this financial and emotional strain as we face our mother’s escalating costs of care.

Here’s a brief snapshot of the financial reality from my own family’s perspective. In 2016 alone, our mother’s out-of-pocket costs of care at her assisted living facility were nearly $116,000. How does this break down?

Room and board, $45,000; medication management, $7,800; help with bathing, $7,440; personal needs account to cover expenses such as cable TV and telephone, $2,650. We also hired personal care attendants for nine hours a day on weekdays and five hours each weekend day to help our mother with self-care tasks when she gets up in the morning (such as dressing and toileting) and to provide companionship and assistance during the day. This additional paid help for two aides averaged $19 per hour or $53,000 for the year.

My mother is fortunate to have a private long-term care insurance policy that my late father had purchased for her and himself back in 1996. Today, only about 11 percent of older adults own such insurance policies, with premiums generally unaffordable to most American families. My mother’s private long-term insurance policy paid $29,760, or only about 25 percent of her cost of care, in 2016. Because she has resided in an assisted living facility for four years, and used home care services for about two years before she moved out of her home, she has nearly exhausted her lifetime maximum benefit of $146,000. Seeing our mother deplete her financial resources to pay for increasingly expensive LTSS is a tremendous worry for me and my sisters.

And these costs don’t even include our mother’s out-of-pocket spending for medical care (such as costs for prescription drugs, dental care and health insurance premiums) and other living expenses (such as incontinence supplies). These expenses also exclude costs incurred by me and my sisters, including monthly meal and travel costs to and from Maryland (where I live) and New Jersey. Importantly, the costs don’t reflect the time and emotional energy one of my sisters spends in checking, verifying, paying and keeping track of the monthly bills on a spreadsheet.

LTSS is unaffordable for most people over an extended period of time.

Adding to our worries is the reality that our mother’s expenses are likely to go nowhere but up. Due to her need for greater help and supervision in daily activities, she may have to move from assisted living to a skilled nursing facility where the cost of care for a private room for an individual with dementia is almost $130,000 a year.  This cost excludes hiring paid help to provide one-on-one support and companionship for our mother, who is nearly blind. Who can afford this? And for how long?

Most Americans are often stunned at the high cost of LTSS, especially nursing home costs.

When most families begin their caregiving journey, they are unaware that Medicare does not pay for LTSS for people like my mother who need help with everyday activities, such as bathing, dressing or eating. And private long-term care insurance meets the needs of only a few.

Better options are critically needed by American families to help them pay for LTSS. 

Recently, my colleague Howard Gleckman noted that families spend more to care for their aging parents than to raise their kids. Many of us know that all too well. While most families voluntarily take personal responsibility for caring for older family members’ needs, middle-income family caregivers are unable to assume financial burdens and support on their own. Like our kids, our society, too, has a shared responsibility in caring for its older adults with complex care needs and people with disabilities. Neither family nor society can do it alone.



Lynn Friss Feinberg is a senior strategic policy adviser for the AARP Public Policy Institute. She has conducted policy analysis and applied research on family caregiving and long-term services and supports for more than 30 years.



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