When Lorraine Kukucka saw that her mother鈥檚 deteriorating health would soon mean she couldn鈥檛 live on her own, she started to look into long-term care options near home in Ebensburg, Pa.
鈥淚 was shocked when we needed to find a place for my mom how much it was going to be,鈥� Kukucka said.
By that time, her mother, Santina Day, was living alone on a total income of about $1,250 a month from Social Security and her late husband鈥檚 pension.
In general, people in Day鈥檚 position can consider two types of long-term care facilities: Skilled care, commonly called nursing homes, which the Center for Medicare and Medicaid Services defines as 鈥渕edically necessary care that can only be provided by or under the supervision of skilled or licensed medical personnel,鈥� and custodial care, which the center says 鈥渃onsists of any non-medical care that can reasonably and safely be provided by non-licensed caregivers.鈥�
Custodial care homes are known by different names, based on state licensing laws. Most commonly, they are called assisted living homes and personal care homes.
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Nationally, custodial care homes cost about $5,350 a month and nursing homes are about $8,669 a month for a semi-private room, according to senior insurance company Genworth鈥檚 most recent annual survey in 2023.
Medicare covers the first 20 days in a nursing home and pays about $200 a day for the next 80 days. After that, in most states, Medicaid will cover nursing home care for those whose income is under $2,829 a month according to the American Council on Aging. Requirements for total assets Medicaid allows qualifying clients to maintain can be as low as $2,000 and depends on the state.
The share of the U.S. population older than 65 keeps rising and more than half of older Americans will need some version of long-term health care, experts agree. CNHI 暗黑爆料 and The Associated Press have combined to examine , from adult day cares to high-end assisted living facilities, to understand the challenges in affordability, staffing and equity that exist today and lie ahead.
Custodial care costs
In most states, there is no government financial help for custodial care.
That made it difficult for Day鈥檚 family. While it was clear she could not live alone, her health didn鈥檛 require 24-hour nursing care.
鈥淪he鈥檚 pretty with it,鈥� Kukucka said. 鈥淪he needs care. She doesn鈥檛 cook for herself anymore and she needs help with her medications.鈥�
Since she only qualified her for custodial care, there was no government help to bridge the gap between her $1,250-a-month income and the average $5,350 average monthly cost of an assisted living home.
鈥淚t was hard to find anything that would accept her,鈥� Kukucka said.
With help from Johnstown, Pennsylvania-based independent senior adviser Eileen Graham, Kukucka checked out personal care and assisted living homes in the Johnstown-Ebensburg area.
The family selected The Atrium, a personal care home developed from a former motel in downtown Johnstown. The home鈥檚 administrators agreed to accept Day鈥檚 Social Security and pension income while the family worked to retrieve Day鈥檚 late husband's veterans鈥� benefits, which also go toward her care.
Planning ahead
Fortunately, Day鈥檚 declining health was gradual, giving her family time to explore options and find some guidance. Many families are faced with emergency placement situations because of a sudden change in health and a lack of advanced planning, experts say.
Once an individual is in a nursing home, his or her assets will be used to pay for care until the state's maximum asset is met.
Assets include bank accounts, stocks, bonds and other investments made to create income. They also include real estate, but with special provisions that protect the individual鈥檚 home as long as a spouse or relative is living there.
鈥淚 always recommend that people have something in place,鈥� said Lauren Cascino Presser, an attorney with Ayers Presser Elder Attorneys in Johnstown. 鈥淏eing proactive is always the best.鈥�
She suggests discussing the financial options well before any situation arises.
鈥淭here is a good safe way to enter the conversation,鈥� she said.
It starts with sitting down with the parent or other relative and talking about the individual鈥檚 desires and plans. That conversation should eventually include a financial planner and an attorney who specializes in elder law, Presser said.
There are ways to protect some assets, if action is taken in time.
She mentions the example of lifetime gifting, which means giving assets while the individual is still alive to those who would inherit them, including real estate.
Presser warned that timing is critical with lifetime gifting. If the gift is made 鈥� or real estate transferred for less than market value 鈥� less than five years before the family member applies for Medicaid assistance, not only will Medicaid coverage be denied, a penalty period will be awarded that delays eligibility for assistance.
It鈥檚 called the five-year lookback.
鈥淲hen you file for Medicaid, they look at your financials for the last five years,鈥� said elder law attorney Shari Polur of Louisville, Kentucky. 鈥淭hey are going to want the complete five-year story for the person and the spouse.鈥�
Polur and Lauren Marinaro of Clark, New Jersey, speak on behalf of the National Academy of Elder Law Attorneys. They say planning ahead also can help locate the appropriate long-term care for a loved one.
Medicaid includes both federal and state tax dollars, but its programs are administered by the states.
鈥淔or any state that accepts Medicaid dollars, there is a certain list of services they must provide,鈥� Marinaro said. 鈥淭hey must accept it for anyone who is eligible.鈥�
Because the regulations vary by state, those seeking long-term care for a loved one should also look at nearby states, she said. 鈥淔or example, in Indiana, Medicaid covers assisted living for dementia. If you are near a border, sometimes you have to consider living across the state line.鈥�
They stress the importance of working with an elder lawyer while a loved one is in a nursing home using their assets to 鈥渟pend down鈥� to Medicaid eligibility.
鈥淣ursing homes reroute your stuff without your knowledge,鈥� Polur said. 鈥淩ules for spend down to Medicaid are different in different states. An attorney can help.鈥�
The attorney can help protect loved ones after the individual passes.
Unlike Medicare, which is earned over a lifetime of paying taxes, Medicaid is an assistance program to help those in need. Its funds are considered loans that will be collected, Polur said.
鈥淢edicaid is not a gift from the government," she said. "If you don鈥檛 play by the rules, your family has to pay for it.鈥�
Those cared for with Medicaid funds are subject to an estate recovery under a federal law that requires states to recover the cost of Medicaid benefits from the estates of recipients after they die.
