Stories from Americans Across the Country Highlight the Need for Investments in Caregiving Needs in President Biden’s Build Back Better Agenda

Too many Americans struggle with the high costs of raising children, caring for a sick family member, providing long-term care for people with disabilities or older adults, and more. Although professional care is costly for families, caregivers themselves – disproportionately women of color – remain some of the most underpaid workers in the country. And, many American women fill the gap in professional caregiving options by providing unpaid care to their loved ones – often causing them to reduce working hours, choose lower-paying jobs, or leave the labor force entirely.

These barriers affect millions of families across the country and take a toll on the economy and our nation’s competitiveness. That’s why President Biden has proposed generational investments in human infrastructure like caregiving that will ensure every American has a fair shot to get ahead in this country – leading to a more robust, equitable economy.

Below are stories from hardworking Americans highlighting the essential need for caregiving investments in President Biden’s Build Back Better Agenda: 

Kathryn Harnish
Houlton, Maine

Bangor Daily News: Obtaining home care should not be such a struggle

Kathryn Harnish lives in Houlton. She plans to return to the workforce as an elder abuse advocate later this month.

Last year, I began my journey as an unpaid caregiver when my 82-year-old father’s liver failed him. Over the course of 10 days in the ICU at Northern Light Eastern Maine Medical Center, I got a crash course in critical caregiving.

While my dad was at the hospital, I talked with others who were visiting aging relatives. Many had to make similar decisions about what was best for their loved ones, often without the support and resources that my family was fortunate enough to have.

I remember sitting beside my dad and hearing one family’s worries through the curtain separating hospital beds. Their father was experiencing significant cognitive decline, and they couldn’t find home-based care for him.

I’d see a constant flow of people through the consultation rooms of the ICU and the struggles of relatives who sat with their family member’s doctors. Many families looked defeated: Their loved ones could not be released from the hospital without full-time home care.

I realize just how lucky my family and I were. When it became clear that my dad would need full-time assistance at home, I was able to step in, knowing that our country’s broken home care system might not be able to provide the care he needed. The software company for which I worked had just downsized, and I had lost my job. But I had enough in savings and severance to hold me over while I cared for my parents.

Many people need to continue their careers and depend on professional home care workers to help care for their aging parents. Unfortunately, the home care industry is so underfunded and understaffed that it’s almost impossible to find and retain quality home care workers.

In Maine especially, there simply aren’t enough caregivers to meet the demand — particularly in rural areas like mine. In February of this year, 9,443 hours of approved personal support care went undelivered to 857 people, including 538 older Mainers who received no services at all.

The waitlist has grown so long that more people are waiting for home care services than are currently receiving them. Maine ranks 44th in the country for accessibility and affordability of long-term services and supports. This will only worsen. Maine now has a 3 percent annual growth rate of people 65 and older, the second largest of any state in the nation.

I’m heartened by President Joe Biden’s effort to include $400 billion for home care in his economic agenda. This will improve pay, benefits, and training for professional home care workers. I’m grateful to Sen. Angus King for his support for these improvements, and respectfully urge Sen. Susan Collins to do the same: It’s vital to the health of Maine’s families and the state’s care economy.

Home care is extremely difficult, both physically and emotionally. Caregiving for my parents was the most taxing work I’ve ever done. From the time my father fell ill until his death this past February, I spent countless hours providing care for him while also supporting my mother, whose severe arthritis in her hips and knees was limiting her mobility.

We all want to be sure that our parents age well. I’m grateful that I was able to address my parents’ needs without making radical compromises in other areas of my life. No one should be forced into life-altering decisions simply because our society won’t invest appropriately in the amazing women and men who do the hard work of caregiving.

Dina Yassin
Panama City, Florida

Pensacola News Journal: My mom sacrificed her career to care for my ailing dad. Home care needs revamped.

I’ve never known my dad without his wheelchair. Six months after my family immigrated to America from Egypt in the 1970s, my father was diagnosed with a rare neurological illness: peripheral neuropathy. The ailment is similar to ALS and causes a person to progressively lose control of their motor skills. 

As his condition worsened, my father had to retire from his job as a doctor. My mother sacrificed her career as a pharmacist to care for him. She wouldn’t have had to, if there had been a robust system of professional home care available to families that needed it.

Some people can afford nursing home care for their parents, but that’s beyond the financial means of many of us. Home care was affordable, but there was and still is a significant shortage of workers in the field. We couldn’t secure anyone for full time care at home.

People employed in home care make only $17,000 a year on average and rarely receive benefits so the industry has a hard time attracting and keeping workers. If my father soiled his clothes or his bedding and needed to be bathed, or if he needed to be lifted into his wheelchair, my mother had to do it. 

My father died in 2012, and to this day my mother lives with the health effects of caring for him through his illness. His physical care left her with back problems. She also now suffers from COPD; She has use of just one lung because she didn’t prioritize her own health appointments over my father’s. The mental and emotional toll has affected her as well. 

My mother tried, but couldn’t shield us from the severity of my dad’s illness. After I grew up and came to understand the severity of his condition, I gave up my job as a teacher to help care for my dad.  I now care full time for my mom. I’d like to return to my work as a teacher, but I need to know someone will be here to care for my mother so she can remain at home. Like many women, both my sister and I forfeited vacations and career opportunities.

Our story is not unique. More than 50 million Americans are unpaid caregivers for adult family members or friends. The Biden administration’s home care plan would invest $400 billion into the home care industry. The funds will increase wages of caregivers, improve their training, and give them the right to choose to form a union. 

Professional caregivers are crucial infrastructure to many Americans, especially women. In my family, the careers of three women were cut short because we did not have access to home care workers for our father. Women make up nearly half the workforce; American jobs depend on investment in the care economy. 

It’s time to professionalize the care industry that millions of Americans depend upon. Between the broken health system’s unwillingness to pay for care, the lack of skilled health care workers, and the high turnover rate, it sometimes feels as if a never-ending cycle of sacrifice falls on the shoulders of women. If Biden’s plan can bring about change in this industry, it can’t come soon enough. 

Kimberly Crawley
Ashburn, Virginia

Virginia Mercury: Home care workers allow me to keep a roof over my head. They deserve a better deal.

I’m a single mom.

My son Isaac spent 11 of his first 13 months in a hospital ICU. By his first birthday, he had undergone more than a dozen surgeries that aimed to give him a functioning esophagus. At just 14 months old, he had reached his $2 million lifetime max in health benefits.

Fortunately, I was able to switch him over to my insurance. And after the Affordable Care Act passed, we no longer faced lifetime health insurance caps.

But I still worry about Isaac’s health care, although for a very different reason: From one day to the next, I never know whether a trained home care worker will be available to care for him at night.

Across the country, there’s a shortage of home care workers. Salaries are too low for these caregivers, and they rarely are offered sick leave or vacation or health benefits.

Until recently, Isaac used a tracheostomy tube to breathe. Just this month, we received some welcome news from his doctor: After 12 long years, my son would no longer need a breathing tube. I’ve never been happier, and neither has Isaac.

Isaac still uses a feeding tube, however. And if his tracheostomy were to become blocked or dislodged, his life could be at risk. So a health nurse staffs our home 16 hours each week, to help keep him healthy and safe.

But that’s only if we can actually find someone. Every Friday, I call a nursing agency to see if someone is available to care for Isaac during the following week. Too often, their answer is no.
A welcome change could be on the horizon for caregivers and those of us who depend on them. The Biden administration wants to improve and expand home- and community-based services for older Americans and people with disabilities by investing $400 billion in the home care industry.

This funding could help ensure more people like my son get access to the care they need at home. Families struggled to find caregivers before the pandemic, and it’s even more challenging now.

Caregivers are an essential part of our lives but every day across this country, families like mine are left to shoulder the responsibility of caring for a loved one when we can’t find or afford the help we need.

If not for home care workers, I couldn’t work as a high school math teacher because it would be impossible to care for Isaac all night and to hold down my job during the day. And if I couldn’t work, my family — Isaac, his younger brother and I — would lose everything. Home care workers literally allow me to keep a roof over our heads.

If caregivers were paid more, if they had benefits like affordable health care and sick time, they might choose to remain in the profession longer. If there were better job training options, they might find a path to greater fulfillment at work and possibilities for career advancement. Sadly, that’s not the case. Turnover is high, and the demand for their work far exceeds their numbers.
Isaac is now finishing the fifth grade. Over the course of his 12 years, he has undergone over 30 surgeries — more than two per year, on average. But he’s a happy kid who enjoys playing outside with his neighborhood friends and riding his bike with his brother.

We need to improve and strengthen the systems of care within the home to support families like mine. We work hard and we want to see our children thrive at school and in our communities.
That starts with better wages, training, and benefits for the caregivers trusted to care for children like mine. President Biden’s jobs plan is designed to do just that. It’s time for Congress to help the people who support my son to lead a normal life and allow me to work every day.

Jessica Russell
Portland, Maine

Portland Press Herald: Maine Voices: A car crash left me paralyzed. Home care workers let me work, support my family

When caregivers have economic stability, people with disabilities do, too. Maine’s senators should listen to people like me who support the American Jobs Plan.

I was 18 years old, driving home from Toronto with friends I met playing college soccer. It was a rainy morning. We hydroplaned into a concrete highway barrier. One of my teammates died, and three others were injured. I was left paralyzed from the chest down.

I had just started attending college and had only a taste of the independence I had wanted for so long. Suddenly, I was more dependent than ever on the people around me.

That was 21 years ago. I still rely on a wheelchair, and I’ve lost most of my hand function and fine motor skills. I feel fortunate every day that I have access to quality, reliable home-based health care. Because of my caregiving team, I’m able to live the life today that I imagined before my accident.

I’m married. I have a son. I have a house and two dogs. I’m able to work full time, provide health insurance for my family and plan for my future by contributing to a 401(k). I was also able to purchase a van that I can drive from my wheelchair. I am able to be the mom I always wanted to be to my 8-year-old son.

Each morning, a home care worker helps me to transfer out of bed, take a shower, use the bathroom and get dressed. She then helps me get into my wheelchair for the day. My caregiver also helps with laundry, dishes and light cleaning. If I have any appointments that require that I get out of my chair, she accompanies me. At the end of each day, I need assistance getting into bed and getting comfortable for the night. All of this accounts for many hours of care each day. There’s no question that without this help, I’d end up without a job and in a facility.

Maine has a significant shortage of caregivers, so people with disabilities and seniors often find that they cannot access the care they need. In addition, the industry is underfunded and understaffed. The Biden administration’s American Jobs Plan would invest $400 billion in the caregiving industry to increase the pay, benefits and training of home care workers.

[…]

I urge Sens. Angus King and Susan Collins to listen to people like me with disabilities who support this plan. We are the best experts on what we need to be productive citizens within our communities, families and our workplaces. Investing in the caregiving industry keeps those of us in the disability community from having to give up our independence. The American Jobs Plan will invest in the care that Mainers need right now.

Because of access to skilled, capable in-home care, a woman who decades ago lost the use of half her body can drive her kid to soccer practice. Even when lives are upended, like mine was after my accident all those years ago, home care workers help make the seemingly impossible, possible.

Jamie Villers
Concord, New Hampshire

Concord Monitor: My Turn: Working mothers know the importance of quality in-home care

For 20-plus years as a nurse, I have treated many patients with dementia, mostly grandmothers and grandfathers. I never thought I’d live to see a child of mine develop the illness. However, two years ago, my 31-year-old daughter Alyssa was diagnosed with frontotemporal lobe dementia. My family’s lives and careers completely changed.

Alyssa is the second oldest of my six children. All her life she’s been brilliant, an overachiever. She worked with the CDC in public health while pursuing her master’s degree at Emory University. In 2017, she was living and working in Pittsburgh, Pennsylvania with her longtime boyfriend while employed in the infection prevention department of the University of Pittsburgh Medical Center. One day, she called and said she wanted to uproot her life and move back home with us in New Hampshire.

I didn’t really understand the reason at the time. We noticed some differences in her behavior, she didn’t want to work and decided not to drive anymore. After about a month of living at home, she refused to shower or prepare her meals. Eventually, we had to admit her to the hospital against her will for an emergency psychiatric evaluation.

Brain scans showed atrophy of the frontal lobe. I had seen scans like this at work. I didn’t want to believe it. I thought, people that young rarely get dementia, and there’s none in the family. Just six months later, she was officially diagnosed.

As her condition worsened, we were no longer able to leave her home alone safely. I had to move to a place that would suit both of us so she could live with me. I work full time, so I needed to find her a home caregiver during the day. Unfortunately, the caregiving industry is underfunded and also understaffed. This lack of investment not only affects their own families but also the families who want to hire them.

New Hampshire has a tremendous shortage of in-home health workers. It took a year and a half to find an agency, and the workers aren’t available full time. We’d have a caregiver one day and they’d quit the next. We went through three different caregivers in the first six months. One caregiver called the morning she was scheduled to work and said she couldn’t afford to come back because the pay was so low. Another was in the job while she was applying to start a more stable career field.

I don’t blame them. On average, home care workers make $17,000 a year and many do not get paid sick time, vacation time or affordable healthcare. They were all moving on to better-paying jobs, for the sake of their families and loved ones.

For mothers like me who have children with medical complexities, the responsibility often falls on us to drop our careers and care for our children ourselves. The Biden Administration has a solution for this. The American Jobs Plan will invest $400 billion in the caregiving industry, which would improve the pay, benefits and training of professional home care workers and ensure they have the right to join together in a union.

There’s always a feeling of insecurity when you leave your loved one home with someone you don’t know. Every time a phone rings, or you get a text message, your heart skips.

I and my five other children had to take turns watching Alyssa. All of my children are in their thirties trying to hold their own jobs and raise their own children. Even though we each have FMLA through our jobs, we’re constantly playing catch up at work because at any moment we might need to rush home and care for Alyssa.

As a nurse supervisor, I often have to pick up slack at work. I might have to fill in for a sick staff member, but then I get a phone call from home about Alyssa and I have to leave abruptly. Not having caregivers has damaged how I’m seen by my employees. It makes me look unreliable.
Now, thankfully, we have finally found a consistent caregiver and it’s making a big difference, but we still cannot get her full time as she’s stretched thin with other clients. Alyssa’s dementia is rapidly worsening. The younger the person, the more quickly dementia progresses. In 2017, she was able to drive and feed and dress herself. Now she can no longer communicate. She eats with her hands and needs help getting dressed. Access to full-time and quality caregivers will become even more vital in time.

My family and others like mine who have children with medical complexities desperately need Congress to invest in the caregiving community. For the sake of our loved ones and the careers we need to keep, I hope that they will.

Ann Hodgins
Mesa, Arizona

Arizona Republic: I found great caregivers for my mom with dementia. Not many have that opportunity

Opinion: It’s exceedingly tough to find quality caregivers, so many women end up leaving their jobs to care for loved ones. It shouldn’t be this way.

In her late 80s, my mom was just starting to exhibit signs of dementia.

Although she and my father were physically healthy, she began to forget everyday things, like eating, that were essential to her life. I was worried enough that I hired a caregiver to stay with her two hours a day for a couple of days a week.

By the time my dad passed away, my mother’s dementia had worsened. Before he died, he made me promise that I would keep her at home for as long as I could. Her caregiver now came in in five days a week. She would take care of the tasks my mother could no longer remember or handle – light housekeeping, errands, chores, meals.

One caregiver became multiple caregivers seven days a week, overnight and during the day. Mom had 24-hour coverage, each caregiver working in 12-hour shifts.

The main caregiver who had been with my mom since the very beginning, came Monday through Thursday to continue her essential tasks. The others stayed overnight in case my mom got up during the night or needed to know someone was in the house with her.

From Friday through Sunday, they would come in to take her vitals, measure her medications for the week and cook her meals. In addition to everything else, and perhaps most importantly, they would take her on little adventures. My mother was originally from Spirit Lake, Iowa, so they would take her anywhere she could be near water.

As someone with dementia, it was important for my mother to be cared for in her home. She was able to get the individual care she needed, and when she was tucked into bed each night, she knew where she was.

All the while, I continued teaching full time at Arizona State University while completing my doctorate. I was able to do these things because I knew my mother was safe and in the hands of people who loved her.

Unfortunately, caregivers work in an underfunded and understaffed industry, and millions of Americans struggle to hire caregivers. They make as little as $17,000 a year, and many do not receive the proper training to face the increasing level of care demanded of them.

Because of that, workers are leaving all the time, which makes access to quality caregiving hard to find.

I’m one of the lucky ones, because I had access to caretakers in my area and I could continue my career. But usually, without caregivers, women in the family are expected to leave their jobs and take care of their loved ones full time. 

Millions of women have left the workforce to do so. Until we fix this, it will keep dragging down our whole economy.

The Biden administration’s American Jobs Plan would invest $400 billion into the home care industry.

[…]

If our leaders refuse to invest in their jobs, they are failing to recognize their importance.

I cannot say enough about the level of dedication those caregivers showed for my mother in her last years of life. They treated her like she was their own mother. She wasn’t just a patient to them. She was family.

My mother couldn’t remember their names, but she was always delighted when she saw each of them. To this day, I keep in touch with them.

[…]

Everyone deserves to live out their life in the comfort of their own home and receive individualized attention. Every woman deserves to be able to continue her career. Every caregiver deserves better pay, benefits and the right to unionize.

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