JEANNETTE, Pa. — At 90 years old, Ray Newbaker broke her hip and has dementia.
She upended both her adult children’s lives, moving in with her son, Jay, when she could no longer take care of herself. Her daughter, Paula, moved in, too, to help with the caregiving.
The Newbakers aren’t alone.
As the baby boom generation gets older, families are trying to figure out how to keep their parents out of nursing homes — which became even less attractive when Covid-19 ravaged assisted living facilities — while dealing with their growing and expensive needs. And they’re about to become the center of a political fight in Washington.
Republicans are digging in, painting the Democrats’ elder care proposal as reckless and too expensive. Democrats think it’s a fight they can win with voters, in parts because the Newbakers aren’t an anomaly.
Ray Newbaker needs round-the-clock help to make her meals, cajole her out of bed, assist with her personal hygiene and calm her when her dementia causes hallucinations, which are worse at night. Add trips to the doctor, sorting her insurance claims and ensuring she has a social life.
“It’s the hardest thing I’ve ever done in my entire life,” Paul Newbaker said. “It's just the stress of taking care of her in the proper manner, which is so hard to do as an adult child, and then the financial burden is always ticking in the back of my head.”
For millions of Americans taking care of elderly or disabled loved ones, resources are expensive. Government assistance is provided through Medicaid, but only those with the lowest incomes qualify, and many who qualify don’t get the assistance because many states cap the number of eligible recipients, creating long waiting lists.
The Newbakers pay out of pocket for a home health care aide to come 24 hours a week. They won’t qualify for Medicaid until they spend down their mother’s savings, and then they worry that they won’t have enough money to continue to care for her.
Jay Newbaker worries that it’s not sustainable.
“I call it The Twilight Zone, where we make too much for Medicaid and yet we don't make enough where we can afford 24/7 high-quality care for my mother,” he said. “So we're stuck.”
Democrats have carved out $300 billion to expand home-based care for seniors and the disabled in the $3.5 trillion spending bill dubbed the American Families Plan. The measure would offer states incentives to lift their income caps to 300 times the poverty level, or about $38,600 per person. Democrats say it would enable an additional 3.2 million people to be eligible for home-based assistance.
“The only option shouldn’t be long-term care in a nursing home setting,” Sen. Bob Casey, D-Pa. “The only way to do this is to use a great program called Medicaid to deliver on that promise.”
Republicans are launching an all-out messaging blitz, accusing Democrats of a “reckless tax and spending spree” and saying the American Families Plan would lead to higher inflation and a suffering economy.
Democrats say they aren’t scared of the price tag or of Republican claims about inflation. They point to internal polling conducted for House Democrats by Lake Research Partners, which was obtained by NBC News. Internal polling found that the elder care proposal is one of the most popular components of their agenda among likely Democratic voters.
Two-thirds of voters said expanding access to home-based care for the elderly and the disabled was important, and 48 percent strongly favored the expansion. It is more popular than free pre-kindergarten and child care assistance to middle-class families.
The survey spoke with 900 likely 2022 voters. The core support for the policy comes from women, younger voters, Black voters and Latinas, the pollsters said in a summary. Voters believe that elder care, child care and caregiving are “very important for both a thriving economy and families’ economic security.”
The survey was presented to members of the Democratic caucus as they prepare to write the details of the $3.5 trillion plan. Democratic leaders will walk a difficult tightrope over the next few weeks, when they will have to decide what to include in the measure and how much to spend on every category, which are expected to include paid family leave, an extension of the child tax credit and free preschool and community college, as well as aggressive climate change initiatives.
Progressives have said $3.5 trillion is too little to transform the economy. Moderate Democrats point to the risk of inflation.
Rep. Katherine Clark, D-Mass., a member of the House Women’s Caucus, cared for her dad, who suffered a stroke, her mom, who had Alzheimer’s, and three young children when she was running for Congress. She said elder care is a priority.
“Even though I had resources and options, it was really, really challenging to me. And that story plays out for parents and women across this country every day,” Clark said in an interview. “It is long past time that we recognize how fundamental the care agenda and the care economy is to our economy in general.”
Democrats also want provisions to guarantee that home health care workers make a living wage through reporting guidelines and by requiring a minimum wage, which would be set by region.
The Newbakers’ home health aide, Jodi Caye, who has been caring for the elderly for 25 years, has been with their family for nearly two years. She said she temporarily left the profession because she could make more money elsewhere, but returned to work with the Newbakers.
Caye said that because of the limits created by Covid precautions, if she doesn’t get more hours or a higher wage soon, she will have to leave and find something that pays her more.
“There’s people out there that are working at McDonald’s. So they're making more money than me,” Caye said.