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The Affordability of Long-Term Services and Supports

Lena Tebeau, Cathy Knight, G De Castro, Sally Bagshaw, and Cathy MacCaul following the lunch-and-learn on The Affordability of Long-Term Care in the Seattle City Council Chamber

Last month, Seattle City Councilmember Sally Bagshaw hosted a lunch-and-learn on the affordability of long-term care in the Council Chamber at Seattle City Hall. We were grateful for the opportunity to share both the challenges of paying for long-term services and supports and several opportunities that we want older people, caregivers, and family members to know about—before they need help!

I was joined by Cathy MacCaul, advocacy director at AARP Washington, and G De Castro, who directs aging programs at Asian Counseling and Referral Services (ACRS). Both are valued community partners within the Aging Network and among the “age wave” advocates in Olympia.

What is long-term care?

Sally Bagshaw

Click on the image of Seattle City Councilmember Sally Bagshaw above to watch “The Affordability of Long-Term Care” on the Seattle Channel.

Long-term care is an expense that most families encounter at some point and most are not equipped to pay. Long-term care is more appropriately called long-term services and supports (LTSS) because it can involve a variety of services designed to meet a person’s health or personal care needs during a short or long period of time. Examples include home care assistance, volunteer chore services, home health care, home-delivered meals, adult day health, and respite care. These services help people live as independently and safely as possible when they can no longer perform everyday activities on their own.

Many LTSS services and supports are home-based, and most care is provided by unpaid family members and friends. Some people hire an in-home aide to provide specific services. You can read more about LTSS options on the DSHS Aging and Long-Term Support Administration website.

Who needs long-term services and supports?

To set the stage for this presentation on affordability, we shared several basic stats:

  • About 52 percent of people turning age 65 will need some type of long-term services or supports during their lifetimes.
  • About 14 percent of people will need LTSS for five or more years.
  • More than 15 percent of U.S. residents will spend more than $250,000 on long-term care during their lifetimes.

Dementia care is the most challenging type of long-term support, and the most expensive:

  • About 10 percent of all people age 65+ will have Alzheimer’s dementia—about one in three of those age 85+.
  • The estimated lifetime cost of care for someone with dementia surpasses $340,000.

Following are the median annual cost of care in different types of care setting:

  • Adult day care (five days/week)—$18,200
  • Assisted living facility—$45,000
  • Semi-private nursing home room—$85,775
  • Private nursing home room—$97,455

For many, the only option is home care, often provided by a family member who foregoes other income to care for a loved one. It’s safe to say that long-term support is a significant financial burden for many families.

Aging and Disability Services’ role

As the state-designated and federally recognized Area Agency on Aging for Seattle and King County, Aging and Disability Services is responsible for planning, coordinating, and advocating for a comprehensive service delivery system for older adults, family caregivers, and people with disabilities countywide. This responsibility includes upstream health promotion and disease prevention programs; case management services for people who qualify for Medicaid in-home support; caregiver support services; and a vast range of community-based services that support healthy aging, enhance well-being, and maximize independence.

The healthier a person can become and remain, the less they will need long-term services and supports. But it is common and predictable that a portion of our population will need help. Family and friends do what they can personally and sometimes through private pay. Fewer than 10 percent have private long-term care insurance, which is expensive and can be difficult to obtain. It is common and predictable that family caregivers will become exhausted and that family resources will be drained. That’s when many families turn to the State to explore Medicaid support.

Retirement savings and caregiving costs

At the lunch-and-learn, my AARP Washington colleague, Cathy MacCaul, shared more stats:

  • The median retirement savings for people over 65 is just $148,000.
  • 90 percent of adults are uninsured for long-term services and supports.
  • Plans are expensive and availability is increasingly limited.

Many mistakenly believe Medicare or private insurance will be there with the onset of a chronic illness or injury. About 80 percent of care is provided by family and friends. The economic impact of caregiving is enormous:

  • Lost wages and benefits.
  • Decreased retirement savings.
  • Increased health care costs due to stress and burden.
  • Out-of-pocket expenses—over 75 percent of family caregivers contribute an average of $580 per month ($6,954 per year).

And this is a big one: Over 800,000 Washington state residents help their aging parents, spouses, and loved ones. Their time is equivalent to $10.7 billion in unpaid care—five times what Medicaid spends on long-term services and supports each year.

Washington State Long-Term Care Trust Act

Cathy shared some recent “wins”—opportunities that support families in paying for long-term services and supports needed by parents, grandparents, and themselves, including the Washington State Long-Term Care Trust Act.

Our state’s Long-Term Care Trust Act is the first of its kind in the nation. The Trust is established through a small premium (0.58%) on wages. It creates a $36,500 lifetime long-term care benefit (adjusted annually) that may pay a family caregiver for a certain number of days and/or provide other services and supports such as adult day care, care transitions, memory care, adaptive equipment and technology, home modification, emergency response systems, home safety evaluation, respite, home meals, transportation, dementia supports, education and consultation, nursing and other professional health services or in-home care.

Cathy gets asked a lot, “What difference can $36,500 make?” A lot, it turns out. She provided these examples:

  • 25 hours per week of in-home care for a year
  • 9–18 months in a residential care such as an adult family home or assisted living
  • 5–6 months in a nursing home
  • 5 years of family caregiver support that includes respite, caregiver counseling and education, home modification, adaptive equipment

I hope readers can see that the Washington State Long-Term Care Trust is equally important to caregivers and those who receive that care. Learn more in Cathy’s article, “Washington State Leading the Way for Better Health Care,” in the July 2019 issue of AgeWise.

Community Living Connections Banner - Click to learn moreAccessing Long-Term Services and Supports

To access Medicaid long-term services and supports for someone age 60 or older, call Community Living Connections (toll-free) at 844-348-5464. Adults under age 60 should call DSHS Home and Community Services at 206-341-7750.

Community Living Connections provides free consultations, information, and referrals to older people, adults with disabilities, caregivers, and others who need help navigating programs and services that support healthy aging, enhance well-being, and maximize independence for themselves or a loved one.

People who are primary unpaid caregivers can simply say, “I’m a caregiver.” The professionals who take your call know what questions to ask you. Your call and consultation are free and confidential.

Community Living Connections is funded by Aging and Disability Services. A recent innovation involved the subcontractors in developing their own networks. Read about this innovation in “Community Living Connections: Creating a New Way of Doing Business” (AgeWise, September 2019).


Contributor Cathy KnightContributor Cathy Knight directs Aging and Disability Services, the Area Agency on Aging for Seattle-King County. The agency is a division of the Seattle Human Services Department. For more information, visit www.agingkingcounty.org.


Photo at top (left to right): Lena Tebeau, Cathy Knight, G De Castro, Sally Bagshaw, and Cathy MacCaul following the lunch-and-learn on The Affordability of Long-Term Care in the Seattle City Council Chamber (9/4/19).

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