A 9-year-old boy wakes at dawn to the sound of his mother’s cries for help and the pattering of a toddler’s feet on the floor above his basement room.
“Mark, I really need you today!” pleads his mom. Andrea Bejarano-Robinson has cerebral palsy, a neurological condition that restricts her ability to move, lift heavy objects and even dress herself.
Tossing aside a blue comforter, Mark bounds up the stairs and starts his frenzied morning routine. He has to start a load of family laundry. Then get his 18-month-old brother out of his crib and give him a bottle. Then choose clothes for his mother and help her dress. Then serve breakfast to his two other brothers, ages 3 and 6, and fill three school backpacks with snacks of Cheetos and Kool-Aid. Climbing atop a kitchen counter, he grabs a bottle of Flintstones vitamins from a high shelf, then walks his siblings to their bus stop.
It’s not until Mark climbs into the back of his own school bus, clad in a blue Minecraft T-shirt and high-top sneakers, that his skinny frame finally comes to rest.
“Sometimes I just get so tired,” he says. “And sometimes I wonder why I have to do all this myself.”
Each day, thousands of Minnesota children, some as young as 8 or 9, serve as unpaid caregivers for family members who are too sick or frail to care for themselves. Behind closed doors and out of public view, they perform complicated tasks that would intimidate most adults — from cleaning feeding tubes to administering medications, often alone and without supervision — while helping with a slew of everyday activities like bathing, cooking and paying bills.
Struggling to squeeze in time for play or homework, living in households that can be chaotic and sad, many say they feel they are being robbed of their childhood.
“Time and again, we see these kids fall apart because they’re taking on way too much in the home,” said Cara McGlynn, a social worker at a Little Canada school that serves students with emotional and behavioral disorders. “You want to help, but you know that you are sending them right back to that home where nothing is changing. And your heart just breaks for them.”
County social workers and school counselors around Minnesota say the ranks of child caregivers are growing fast, driven by a deepening crisis in home health care. The supply of personal care workers has failed to keep pace with the burgeoning population of older adults being discharged sooner from hospitals and nursing homes. And cuts in state disability services have aggravated the crisis, forcing more families to forgo paid caregivers.
While the dilemma seems deeply private, it imposes huge public costs. A raft of recent studies have found that child caregivers often struggle in the classroom, drop out of school early and have lasting difficulty forming trusting relationships. Child caregivers suffer higher rates of costly ailments such as depression and anxiety, and are nearly twice as likely as their peers to feel worthless or unloved, according to the National Alliance for Caregiving, a coalition of advocacy groups.
Amid numerous reports of vulnerable adults going without vital care, the state Department of Human Services has called for a statewide summit next month on the shortage of home care workers.
“It shouldn’t fall to kids to take on complicated caregiving tasks that impact their school work,” said Human Services Commissioner Emily Johnson Piper. “We all need to work together and find new ways to address the crisis — whether it’s through technology, wages and benefits, or new ways of delivering services.”
Chronic pain, hectic schedule
Mornings are the hardest time of day for Bejarano-Robinson. Her lower back, neck and shoulders throb with pain. Even bending over to pick up a child’s bottle can be a major effort; many mornings, she relies on Mark to pull on her socks and tie her shoes.
“There are mornings when my body feels like it’s on a continuous jackhammer,” she said.
Her husband, Scott, helps with the children and household chores. But he has a cognitive disability that limits his ability to do complicated tasks, and he works the night shift as a janitor and often sleeps late into the morning.
Bejarano-Robinson, a native of Colombia, was born with her umbilical cord wrapped around her neck, which doctors said may have caused her cerebral palsy. The disorder weakened much of the right side of her body, while scoliosis has left her with chronic back and muscle pain.
But she persevered. She married Scott, a longtime friend; gave birth to four boys; joined the boards of two disability rights groups; coached youth soccer; campaigned door-to-door as she ran for the Robbinsdale Area school board; and now holds a job helping other parents with disabilities. Her hectic schedule often keeps her out past 9 p.m.
“I refuse to let my disability define me,” says Bejarano-Robinson, 35. “My goal in life is to make the world a better place for my children.”
In 2008, while pregnant with her second child, Bejarano-Robinson had a bad fall at home. Her alarmed mother insisted that she get help through Minnesota’s home caregiving program. Hennepin County eventually granted her 3½ hours a day of help in the home.
Finally, she had someone to keep her steady in the shower, help her dress in the morning and do everyday chores like picking up groceries and cleaning the kitchen. For the first time, she even had someone to help her with small tasks, like opening a bottle of aspirin or lifting a pot of boiling water. “I was ecstatic,” she said. “It meant the difference between having a life of my own and being stuck at home.”
“Massive” cuts to home care
A year later, however, Minnesota faced a crushing state deficit. Gov. Tim Pawlenty proposed the most far-reaching cuts in the 30-year history of Minnesota’s home care program. Determined to rein in soaring costs and fraudulent billing practices, lawmakers approved reforms that slashed spending by about $170 million in the next budget cycle and tightened the rules to qualify for state-funded care.
The Department of Human Services estimates that 8,800 Minnesotans have seen their home care services cut back or terminated since the reforms took effect — roughly a quarter of the 31,200 who participated in the program as of 2010.
The cuts took hold just as Minnesota’s job market began to strengthen, and many home caregivers found other, better-paying jobs. By the end of 2014, the number of vacant home health care positions in Minnesota had soared to 4,525 — the highest level on record.
Many clients simply gave up and turned to their children for help, said Anne Henry, an attorney with the Minnesota Disability Law Center, a legal advocacy group. “Those were massive, massive cuts,” she said. “It cast a cloud over families who need in-home care that exists to this day.”
In early March this year, after conducting a new home assessment, Hennepin County slashed Bejarano-Robinson’s daily care services by more than half, to 75 minutes a day. One of her longtime caregivers quit because she couldn’t justify the time and expense of driving to the family’s house in New Hope for such a short session.
Suddenly, Mark became his mother’s primary caregiver — helping her dress, cook dinner, clean the kitchen, open the mail and prepare his brothers for bed and school, among many other chores.
“It’s embarrassing to have to ask my own son to dress me,” Bejarano-Robinson said. “There are some things that boys his age shouldn’t have to see. I have a lot of mother-guilt.’’
“Their families are different”
Mark, who attends a Spanish immersion school in Robbinsdale and dreams of becoming a computer engineer, picked nervously at a tear in the family’s living-room couch as his mother spoke. His siblings dashed in and out of the kitchen, grabbing slices from a pizza that Mark had cooked for them.
From time to time Mark interrupted his mother, reminding her to “think on the positive side.” Even with his duties at home, Mark said, he still has time to play on a soccer team, participate in the Boy Scouts and hang out with his friends. Unlike his peers, however, he has to take care of his family first.
“Most kids I know, their families are really different,” Mark said. “They get more of what I call ‘free play time.’ I only get play time when I don’t have a task.”
Tears welled in his mother’s eyes as she listened.
“Mark,” she said, “you’re a bright kid with a bright future and you’re going to do many great things with your life, and I don’t want to stand in your way.”
“Mom, you never really were,” he said soothingly.
Asked if he would prefer living more like his friends, Mark shook his head. “No, I’m one of those optimistic kids that’s grateful,” he said. “Like if I fell off the roof of this house, then I would be grateful that I didn’t get eaten by sharks. … Other kids might think of this as a bad thing, but I think of it as a once-in-a-lifetime opportunity.”
Numbers hard to pin down
The number of child caregivers in the U.S. is not known with any accuracy, and the hidden nature of their work makes it hard to estimate.
The only national tally, a 2005 household survey by the National Alliance for Caregiving (NAC), placed the number at 1.3 to 1.4 million between the ages of 8 and 18, with most caring for a parent or grandparent. That represents 3.2 percent of all households with children, and works out to perhaps 30,000 young caregivers in Minnesota.
Yet social scientists say this grossly underestimates the true number because many families are too ashamed to admit they depend on their children. And many of the children don’t identify themselves as caregivers, but see the work as part of their regular family chores.
“The thing that is most extraordinary about this population of kids is their absolute isolation,” said Melinda Kavanaugh, an assistant professor of social work at the University of Wisconsin-Milwaukee and one of the few national experts on child caregivers. “There are no policies or programs that target children as caregivers and, as a society, we don’t talk about them.”
In much of Europe, Australia and the United Kingdom, by contrast, child caregivers are afforded special rights, training and even cash assistance.
School administrators in Minnesota have taken notice. Alarmed by a rise in absenteeism, they are paying more attention to signs that a student is carrying too heavy a burden at home — drowsiness in class, missed homework and emotional outbursts.
Shawn Crenshaw, a counselor at Patrick Henry High School in Minneapolis, said he stocks a special desk drawer full of hygiene products, including toothpaste and shampoo, for student caregivers because they are often so busy helping family members that they neglect to take care of themselves.
“You can recognize them by their hoods,” said McGlynn, the social worker from Little Canada. “They’ll have their hoods pulled over their heads, and they’re hunched over, because they don’t want you to see how tired they are. They’re just overwhelmed.”
Kids in “survival mode”
Some studies suggest that caregiving builds empathy and self-esteem in children. But a growing body of research points to disturbing long-term effects, including poor academic performance and psychological trauma. The NAC survey found that 56 percent of young caregivers, ages 8 to 11, report feeling sad or depressed. In addition, younger caregivers are twice as likely to have trouble getting along with teachers than non-caregivers and to associate with kids who get in trouble. A 2006 Gates Foundation study found that 22 percent of high-school dropouts cited caring for a family member as a reason.
Dan Porter, school social work supervisor for a Minnesota intermediate school district that serves 4,000 special-needs students, said his staff has seen a threefold increase since 2011 in the number of students caring for their parents or siblings.
“Most of these kids are in survival mode,” he said. “They’re working until 10 at night, and they’re coming to school worn out because they’re not getting their own needs met.”
Dr. Martha Nance, a chronic-disease specialist at Hennepin County Medical Center, said a few years ago she began noticing more patients arrive at her clinic with child caregivers in tow. Many of the children showed signs of grief and trauma, she said, after spending years caring for loved ones whose health was slowly deteriorating.
“We focus so much of our attention on the adults who are sick,” she said, “and forget that the kids might be suffering too.”
Chores out of reach
For months now, the table at the center of the Robinson living room has been a scene of chaos.
Half-eaten pizza crusts, rolls of toilet paper, toy cars, shoe boxes, opened mail and bags of newspapers are piled high, obscuring the light from a window overlooking their backyard. The mound has grown with each passing day since March, and has become a reminder to Bejarano-Robinson of her difficulty maintaining order in a house of growing boys.
“We have piles, piles and more piles. It’s like we’ve become some `hoarder’s house,’” she said, as little 18-month-old Isaac climbed into her lap. “I can’t bear to look at them, because cleaning up those piles is just one more thing I can’t do.”
Though Mark normally does his chores quietly and without complaint, his frustrations sometimes boil to the surface.
“Mark, I know you love to read, but can you please take the baby!” his mother yelled on a recent morning.
Slamming down a spy novel he picked up at a Dollar Store, Mark snapped back, “Why can’t you ever do any of this yourself! I want to read!”
“Mark, we can’t always get what we want,” his mother said calmly. “Sometimes we have to settle for what we need.”
A regular third-grader
One evening a few weeks later, Mark looked happier. It was the evening of his birthday party, and a tangled mass of boys wrestled atop a pile of wood chips at a playground near his house, oblivious to the storm clouds gathering in the west.
It was a perfect spot for a game of “King of the Hill,” and Mark stood at the center of the ring of boys, fending off his attackers with swift kicks and jabs from his skinny limbs. “Get the birthday boy!” one of them yelled, tackling Mark.
Later, as they hurried back to Mark’s home, the boys argued over which of the major superheroes — Batman, Superman or Spider-Man — has the greatest powers and would win an epic showdown. For several rare hours, until parents arrived to pick up their kids, Mark resembled any other third-grader lost in the wonderment of play.
That night, Mark collapsed on the family’s living-room couch, with his clothes still on and red-white-and-blue frosting smeared across his T-shirt. And for once in a long while, no one dared disturb his sleep.