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University Gazette

The University of North Carolina at Chapel Hill

The kids are not alright

Senior LauraKathryn Smith has been a youth caregiver for most of her life, as her mom has multiple sclerosis and her dad had a traumatic brain injury.

Beep. Beep. Beep. LauraKathryn Smith’s eyes shoot open. She lets them adjust to the light before shutting off the alarm. After a few minutes, she slides out of bed and heads for the rooms of her older brother and sister to wake them. Once they’re up and moving, she gets dressed and heads to the kitchen, where she makes two bowls of cereal. She eats one and then brings the other into a nearby bedroom.

“We’re going to school now,” the Carolina senior tells her mom, who’s still in bed.

“OK. Have a great day,” she says. Smith pauses for a minute — then sets the cereal on the bedside table, kisses her mom and leaves.

Four years before Smith was born, her mother was diagnosed with multiple sclerosis—a disease of the central nervous system. Symptoms can vary, but for most of her life her mother has experienced flareups of double-vision, dizziness, pain down the spine and difficulty thinking clearly.

As a result, Smith learned to be independent at an early age. She was 7 when she began waking her siblings for school. None of them was old enough to drive, so they took a golf cart to the local Kroger, then hopped on a bus for a 45-minute ride to school. 

When Smith was 11, her mother was hospitalized for two weeks, and she and her brother spent a month in foster care, then six more months with their grandparents. After that, Smith moved in with her dad, who struggled with the disability of a traumatic brain injury.

“At some point it hit me,” Smith said. “Even though your parents are supposed to be the ones taking care of you—we think of them as superheroes who can do anything—that’s not always the case. And trying to come to grips with that as a kid and young adult is very difficult.”

Building support 

Even though more than 1.4 million American children under the age of 18 care for siblings or parents who have a chronic illness or disability, support for this demographic is in short supply. Carolina childhood and youth geographer Elizabeth Olson has spent the past decade researching the topic of youth caregivers, children under 18 who care for a family member with a disability, chronic illness or other health circumstance.

In 2016, Olson began the Bookend Caregiving Project, a network of researchers and community members dedicated to improving the well-being of youth caregivers and the older adults for whom they provide care.

At the same time, she started building Carolina Student Carers, a network for students on campus who are caregivers for siblings, parents, grandparents, children or multiple family members.

Smith, who is studying psychology and women’s and gender studies, helped Olson lead the group while continuing to provide care for her mother.

Olson said juggling the responsibilities of caregiving with school can influence where a student goes to school or whether he or she needs to get a job to meet expenses. “Caregiving can really shape a young person’s life trajectory,” Olson said. “And we know that it can both limit and expand kids’ abilities.”

Before coming to Carolina in 2011, Olson spent three years working with youth caregivers in the United Kingdom, which has recognized youth caregivers as a demographic for more than 20 years. 

This means that any government organization there must ensure the protection of caregiver rights, with supports like better transportation, counseling services and even the option to attend camp. Today, upon request, U.K. social workers will visit the homes of these kids to perform a “young carer needs assessment” to identify ways to assist the family.

Olson said she was surprised to find the lack of awareness or support for youth caregivers when she returned to the United States. In her search for fellow advocates, she found the American Association of Caregiving Youth led by Connie Siskowski, the organization’s founder and president. Olson and Siskowski have collaborated on multiple projects including the Caregiving Youth Research Collaborative, a network that seeks to support advances in research and practice for youth caregiving in the United States.

Spreading the message

While youth caregivers receive little to no recognition across the nation, a broader, more familiar group called family caregivers does, largely because of numbers—there are more than 40 million in the United States. For years, AARP has worked with more than 60 aging and disability organizations to rally support for this demographic.

In January, these groups applauded the passing of the Raise Family Caregivers Act, which, if made law, will create an advisory committee for articulating future family caregiving actions in the United States. Through the Department of Health and Human Services, it will develop, maintain and update a national Family Caregiving Strategy—one that must include youth caregivers, Olson said.

“I hope that will finally get the message across that more and more young people are providing care,” Olson said. And with most baby boomers already in retirement, the United States literally does not have enough people—paid, volunteer or family—to provide care. To further that message, Olson and Siskowski participated in a panel discussion this spring at the N.C. Association on Aging State Aging Conference.

“The exciting thing is that, in just one year, we’ve transitioned from me as a researcher caring desperately about this situation to a whole network of people across the state who are stepping up,” Olson said.

Smith plans to become a social worker so she can become a part of that network and make a difference.

“I think I have a lot to add to the conversation because I have my own unique experience with my parents,” Smith said. “A lot of young caregivers don’t have anyone to talk to about this
stuff, and it would have been so nice if I could have talked to anybody about what it’s like. So I’ve decided that I really
want to work with nonprofits—with the people who struggle to get help.”

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