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Needing Care that You Cannot Afford Is Scary: How One State Is Helping

If you need sustained care because of illness or injury or disability, or if you are getting older and can no longer manage everyday tasks on your own, that can be distressing. What can make things even worse is if you cannot afford to pay for the help that you need, and there is no one who is available to provide that care for free.

In the U.S., the price of health care and health insurance is a concern for people of all ages, even when the challenges they are facing are likely to be short-lived. But when Americans need long-term care, the options can be scarcer and frighteningly expensive.

The Special Challenges Facing People Who Are Single or Living Alone

For people who are single and living alone, the challenges can be particularly daunting. What can they do if and when they get to the point where they need help with the activities of daily living, such as preparing meals, bathing, or getting around?

Many seniors want to stay in homes of their own for as long as possible. To do so when you need a fair amount of help, though, you have to have people in your life who are willing and able to provide that help, or you need to pay someone. Not everyone has the former, and the latter can be prohibitively expensive. The alternative many people dread, of moving into a nursing home or other institution that provides care, can be even pricier.

The financial challenges are especially daunting for people who are not married. They are disadvantaged throughout their lives by laws and practices that unfairly favor married people. Those instances add up. A study of women’s financial security showed that by the time they are approaching retirement age, single people have considerably less wealth than married people do.

Plenty of people think they can rely on Medicare for their long-term care needs. They can’t. Medicare covers medical needs, not nursing homes or home health aides. Medicaid is another option, but you have to have to be in very bad shape, financially, to qualify, and not all state programs cover in-home care. Long-term care insurance is still another possibility, but the premiums are becoming outrageously expensive and sometimes the coverage is limited – Alzheimer’s, for instance, is not always covered.

Single people can be ensnared in long-term care challenges even when they are not the people needing the help. Research shows that when aging parents need help, they are more likely to get it from their grown children who are single than from those who are married or coupled. When single people need to cut back on their hours or leave the workforce entirely in order to be there for their parents, they may be putting themselves at serious financial risk. Unlike (some) married people, they typically don’t have another person’s income to fall back on.

A Helpful Step: Washington State’s 2019 Long-Term Care Trust Act

It is easy to be cynical about the government, and sometimes that is totally warranted. But at the state level, some elected leaders are recognizing the long-term care problem and doing something about it. One of the best examples is from the state of Washington, where the Long-Term Care Trust Act was enacted earlier this year.

According to the Act, eligible Washingtonians who need help with three or more activities of daily living can access coverage of $100 a day, up to a lifetime total of $36,500, to pay for what they need. They can tap the funds for a variety of supports and services, including:

  • Professional caregivers who come to their home or some other residential setting
  • Training and pay for family members who are caring for them
  • Relevant home improvements, such as wheelchair ramps or an accessible shower
  • Rides to the doctor
  • Meal delivery programs
  • Emergency alert devices and medication reminder devices

Structurally, the Long-Term Care Trust Act is similar to programs such as Social Security and Medicare. Workers pay into the plan through a payroll tax of 58 cents for every $100 of income. Self-employed workers can opt in. In an article in The Nation, Bryce Covert explains that Washingtonians are eligible to tap into the trust “after paying in for ten years, unless they experience a catastrophic disabling event, in which case they are eligible after three years.” Eligibility, then, is not about age but about need plus contributions to the program.

A Good Step, But Not a Huge One

The problem of long-term care is such an important one that any progress at all is welcome. A lifetime total of $36,500, though, won’t come close to covering a full-time nursing home. Even if you just need several hours of care a week, that total amount may not last more than a year or so.

As is often the case with existing laws, this one seems to serve the needs of family members more than friends. The Act specifies that funds can be used for the training and pay of family members who are providing care. So far as I can tell, friends are excluded. If you are a friend who has been showing up for someone who needs your help, perhaps even taking time off from work to do so, it appears that you are no better off now that the Act has been passed than you were before. The same is true if you are the person who needs help and the persons able and willing to provide it are friends instead of relatives.

To prepare this article, I consulted the text of the Long-Term Care Trust Act, a fact sheet compiled by a broad-based coalition of “Washingtonians for a Responsible Future,” AARP’s discussion of it, a few other articles, and the article in The Nation. The latter offered the widest-ranging and most thoughtful consideration of the issues. And yet, disappointingly, the people the author seemed to worry about the most were married people.

The article opens with a story about a 90-something-year-old married man who broke his hip and also has some memory problems. Now his wife is afraid to leave his side. Their daughter (whose marital status is unspecified) is trying to help, making the half-hour trip once a week. The daughter just retired from her work as a gerontologist. She told the author about a client whose husband needed constant care; the client was there all the time to provide it. She could not afford to hire help. The married couple from the first story did have some financial resources but were concerned about spending them down.

It is true, of course, that those married couples were burdened by the cost of the care they needed. The Long-Term Care Trust Act will be quite a relief for them. But many of the people in need who are unmarried are in an even more challenging position. They may have friends who are available to help them, but I don’t think those friends are covered under the Act.

The Long-Term Care Trust Act was signed into law by Governor Jay Inslee, who was a Democratic Presidential candidate for 2020 before dropping out of the race. Similar legislation is under consideration in other states. As for the federal level, the article at The Nation, published in May, had this to say:

“Long-term care is also a facet of the Medicare for All bill put forward in Congress by Representative Pramila Jayapal in February—something the current system doesn’t cover, nor is included in Senator Bernie Sanders’s version. Jayapal’s bill would provide coverage for long-term nursing-home and care services.”

As the number of people needing long-term care continues to grow, and the costs of that care increase even more, maybe more legislators will begin to recognize the urgency of the need. If the model from the state of Washington proves successful, perhaps that will help, too.

[Note: This post was adapted from a column originally published at Unmarried Equality (UE), with the organization’s permission. The opinions expressed are my own. For links to previous UE columns, click here.]

Needing Care that You Cannot Afford Is Scary: How One State Is Helping


Bella DePaulo, Ph.D

Bella DePaulo (Ph.D., Harvard; Academic Affiliate, Psychological and Brain Sciences, UC Santa Barbara), an expert on single life, is the author of several books, including "Singled Out: How Singles Are Stereotyped, Stigmatized, and Ignored, and Still Live Happily Ever After" and "How We Live Now: Redefining Home and Family in the 21st Century." Her TEDx talk is "What no one ever told you about people who are single," https://www.youtube.com/watch?v=lyZysfafOAs. Dr. DePaulo has discussed singles and single life on radio and television, including NPR and CNN, and her work has been described in newspapers such as the New York Times, the Washington Post, the Wall Street Journal, and USA Today, and magazines such as Time, Atlantic, the Week, More, the Nation, Business Week, AARP Magazine, and Newsweek. Dr. DePaulo is in her sixties. She has always been single and always will be. She is "single at heart" -- single is how she lives her best and most meaningful life. Visit her website at www.BellaDePaulo.com.


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APA Reference
DePaulo, B. (2019). Needing Care that You Cannot Afford Is Scary: How One State Is Helping. Psych Central. Retrieved on October 23, 2019, from https://blogs.psychcentral.com/single-at-heart/2019/10/needing-care-that-you-cannot-afford-is-scary-how-one-state-is-helping/

 

Last updated: 4 Oct 2019
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