Crisis of Care - Pennsylvania and America Are in ‘Huge Trouble’ Unless We Help Families With Caregiving Crisis of Care - Pennsylvania and America Are in ‘Huge Trouble’ Unless We Help Families With Caregiving

Democrats in Congress are currently negotiating over the terms of the Build Back Better Act. If it passes, it could be a transformative investment in America’s care infrastructure.

This is the final installment of our Crisis of Care series. Make sure to take a look back at Parts One, Two, and Three to better understand the crisis facing Pennsylvania caregivers today.

During the summer of 2019, Kyle Mullins had noticed a worsening slur in his father’s speech. For months, he and his family worried about what might be causing it. His father had an MRI around the holidays, which came back clear.

The family “rejoiced for a few moments,” Mullins told The Keystone. But his father’s clean bill of health was short-lived.

In January 2020, Mullins’ father was diagnosed with ALS. The diagnosis devastated Mullins, who has two children himself. 

“We were rocked both emotionally and spiritually,” Mullins said. “As a son, my heart breaks. It breaks easily and time and again when I know what this is doing, how this breaks my parents’ hearts.”

Mullins is not his father’s primary caregiver—his mother has taken on that responsibility—but he still helps out. Understanding the burden weighing on his mother’s shoulders, he insists on cutting their grass during the summer and shoveling snow or snow-blowing during the winter. 

“It gives me another opportunity to go and be with them, to be helpful, to do what a nearby son should do for aging parents, even if they didn’t have a debilitating disease,” Mullins said. 

Mullins and his family’s experience is not uncommon. There are more than 50 million unpaid family caregivers in the US, including 11 million “sandwich caregivers,” who are caught in the middle of two generations, raising young children while also providing care for their aging parents. 

Mullins knows families like his need help. 

Unlike other developed countries around the world, the US has no comprehensive childcare, elder care, or paid family leave system, and as a result, sandwich caregivers are often left to juggle raising their kids, caring for their parents, and maintaining their jobs. It’s exhausting and the resources available to caregivers vary by location and can be expensive, limited, and difficult to access. 

The system, simply put, is a mess. 

But unlike most people, Mullins is in a position to try to provide that help. In addition to being a father of two, Mullins is a lawmaker representing Scranton in the Pennsylvania House of Representatives.

Earlier this year, Mullins and his Democratic colleagues tried to pass their Plan for PA, a program that would have used funds from President Joe Biden’s American Rescue Plan to invest in human infrastructure, such as paid family and medical leave.  

Mullins believes the Plan for PA would have alleviated some families’ burdens. But the Republican-controlled state Legislature blocked the plan. 

“The bulk of that funding—despite all of our advocacy for worthwhile investments—was largely left on the table during the June budget process at the hands of [the Republican-led legislature] and placed in a rainy day fund when we are insisting that it’s pouring in Pennsylvania,” Mullins said. 

Democrats may have been blocked at the state level, but Biden is on the verge of delivering some much-needed help to sandwich caregivers and their families. 

‘We’re In Huge Trouble’ If We Don’t Build Back Better 

Democrats in Congress are currently negotiating over the terms of the Build Back Better Act. If it passes, it could be a transformative investment in America’s care infrastructure that:

  • provides financial assistance to increase the availability of child care and make it more affordable.
  • funds free universal preschool for all 3- and 4-year-olds.
  • implements a national paid family and medical leave system.
  • increases pay for childcare workers to address recruitment and retention issues.
  • extends the child tax credit expansion enacted in the American Rescue Plan.
  • expands Medicaid’s home and community-based care services in order to help more elderly adults age at home.
  • increases pay for home care workers to address recruitment and retention issues.

The bill is likely to be altered during negotiations and some provisions could be dropped or watered down, but as conceived by Biden, it would provide cradle-to-grave benefits and help sandwich caregivers and their families afford child care, have the freedom to take time off with pay, and make in-home care more accessible for thousands of Pennsylvania families. 

“We are on the precipice of potential unprecedented investments in care and care infrastructure,” said Charlotte Dodge, senior policy and government affairs manager at Caring Across Generations. 

All of these measures would provide much-needed relief to families. “Whatever benefits the patient will most likely benefit the caregiver and vice versa,” said Mike Wittke, vice president of research and advocacy at the National Alliance for Caregiving.

Certainly, the plan doesn’t address everything, and everyone has ideas about what else needs to be done to fix the system. 

Frackville resident and former sandwich caregiver Angie Roman, for example, wants more funding for area agencies on aging and believes that paperwork and application processes need to be streamlined. 

“I have a computer and I have the skills to complete all the documentation, but I have looked at some of the stuff and I’m like, ‘I don’t know how people do it who don’t have my skill set and my tools,’” the 61-year-old said. “It just needs to be much simpler for everybody.”

Brenda Edelman, a licensed clinical social worker and the assistant director of Older Adult Service at Jewish Family and Children’s Service of Greater Philadelphia (JFCS Philly), believes there needs to be more help for seniors who don’t qualify for Medicaid. 

In theory, OPTIONS—which provides home- and community-based care for eligible individuals ages 60+—is that program in Pennsylvania, but the waiting lists can run more than two years, Edelman said. She wants the government to provide more funding for the program to reduce the waiting list and help people get care in their homes, rather than in facilities.  

Hansol Kim, a postdoctoral associate at the National Rehabilitation Research & Training Center on Family Support at the University of Pittsburgh, is focused on the financial consequences facing sandwich caregivers, many of whom are forced to quit their jobs or reduce their hours. “The government needs to ensure that caregivers are not losing their Social Security benefits while taking time out of the workforce to care for their loved ones,” she said. “They need to provide those types of policies for sandwich generation caregivers.”

In a recent report for Congress, family caregiver advocates found the level of help needed staggering. Caregivers surveyed for the report found it difficult to respond when asked about a single pressing need. As the authors write:

One respondent appeared to speak for many when they noted, “There isn’t a way to narrow this down to one need; the lack of support is far too great.”

Another wrote, “Just one? Where do you start? I’m exhausted.”

Caregivers, and especially sandwich caregivers, need help. So, too, do those they love. 

Pennsylvanians recognize this. A whopping 87% of likely voters in Pennsylvania support investments in long-term care, 70% support child care investments, 67% support paid family and medical leave, and 64% support universal pre-K, according to a recent poll from Data for Progress. 

Despite the clear and urgent need for action, Biden’s bill is not guaranteed to pass. Not a single Republican in Congress plans to vote for what would represent a groundbreaking investment in American families. A handful of conservative Democrats have also expressed concerns about the size and scope of the plan, but have simultaneously failed to consider the cost of not acting.

What happens if Congress does nothing? What happens if the US doesn’t address the glaring child care and elder care crises that grow worse with each passing day?

“We’re in huge trouble. It’s going to break all of our systems,” said Heidi Donovan, a professor of nursing and medicine and the co-director of the National Rehabilitation Research & Training Center on Family Support at the University of Pittsburgh. “As our baby boomers age at this rapid rate, the number of family caregivers available to provide the care, which our whole economy depends on, is getting smaller … there are fewer people to do that care and it has to come from Medicaid and Medicare, it just breaks the system.”

The long-term implications could be catastrophic for generations to come.

“Are we going to see a generation—of women primarily, but others as well—having to make the choice to leave the workforce and what then does that do to the health of families down the line?” Donovan wondered. “If someone in a family has to leave the workforce, then what happens to their kids long term? Do those kids then have educational opportunities taken away because their parents no longer have the finances or resources to help them with college?”

Making Dying and Grieving Easier

It should be no surprise that one of the most devastating aspects of caregiving is when that care comes to an end. While nothing will make the loss of a parent OK, there’s a case to be made that the death of a loved one can be made less painful by providing support during the caregiving process. 

The passing of Roman’s mother provides a case study of sorts. 

“When she died, I realized I had not mourned the mother that I lost when she lost her memory. I was so busy caregiving that I didn’t have a chance to miss what I was losing as I lost it,” Roman said through tears. “I had a wonderful mother. She was what I call a renaissance woman. She literally grew up on a farm. She taught herself how to do anything she wanted to do.”

What if lawmakers could take away even some of the pain she experienced by offering more help? What if they could make the grieving process easier by providing more support over the years? Mullins believes that’s what they’re called to do and wishes it’s what they would do.

He wishes federal and state lawmakers would recognize this isn’t just politics—that they and their loved ones will inevitably encounter the healthcare and long-term care systems and need assistance to age with dignity. Because if they did, Mullins genuinely thinks things could be different and that they could actually fulfill their duties as public servants. 

”If we would approach it from a personal standpoint instead of a political one, it’s my belief that the votes would coalesce to do more good than all this stalling,” he said.

Part One: Family Caregivers Struggle with a Broken System

Part Two: The Financial, Mental, and Physical Toll of Being a Sandwich Caregiver

Q&A: 11 Million People Are Raising Kids and Caring for Parents. Here’s One Therapist’s Advice for Them.

Part Three: A List of Resources Available for Pennsylvania Caregivers