When 12-year-old Alisha Thompson wakes up, she immediately prepares her mother’s medication.
Then she gets ready for school, making sure her mother has eaten before walking to the school bus stop. Between classes, she texts her mother around noon to remind her to take her medicine and eat.
“It’s important that she eats,” Thompson said. “She has to eat.”
Thompson’s mother, 49-year-old Shelia Bawtry, is disabled with diabetes. Bawtry has been disabled since 2000 and has numerous health issues, including nerve and bone problems, diabetic vision loss and a “grossly elevated” white blood cell count that doctors are trying to determine. Bawtry’s health has deteriorated over the past few decades, making her unable to care for her children in the way a mother would normally.
Instead, the roles have been reversed in her household and are quietly reversing among millions across the United States, putting financial and emotional strain on families and young children, medical experts say.
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“Young caregivers are on the rise and yet they’re not getting the attention they deserve,” said Connie Siszkowski, founder of the American Association of Caregiver Youth (AACY), a nonprofit that advocates for and supports young caregivers.
How many young carers do you have?
According to reports from the National Alliance for Caregiving and other sources, an estimated 5.4 million children under the age of 18 were caring for a chronically ill or functionally impaired parent, grandparent or sibling in 2019, up from about 1.3 million to 1.4 million in 2005.
But that figure is “a huge underestimate,” Siszkowski said. “I’d conservatively put it at least 7.5 million.”
Experts said an ageing population, increased drug and alcohol use, mental health issues, shorter hospital stays and longer COVID-19 illnesses are likely increasing the need for children to help with household chores.
Additionally, “families sometimes don’t talk about it because they’re afraid that if it becomes public knowledge their children may be taken away from their homes,” she said.
Why are more young people taking on caregiving responsibilities?
Experts say in-home care and nursing homes are hard to find, especially for younger people, and too expensive for most people — for example, at 49, Boatrey could need care for the next 30 or more years.
“Everyone’s living longer, but not necessarily healthier,” says Patrick Simasko, an elder law attorney and financial adviser with Simasko Law Firm in Mount Clemens, Michigan.
And most people don’t want to spend years in a nursing home away from their families, he said.
At the same time, “no American child should have to interrupt their school or their life to care for a family member,” Siszkowski said.
Is there government assistance for families and young people?
“There are literally no government benefits in the United States that are going to help,” Simasko said.
President Joe Biden introduced executive actions last year aimed at expanding care and raising wages, but none of it helped younger caregivers.
Other countries, such as the UK and Australia, recognise “young carers” through laws and policies and provide benefits, Siszkowski said. Unpaid work by young carers is estimated to be more than $8.5 billion, he said.
In the United States, Medicare does not pay family members who provide care, and low-income families enrolled in Medicaid can only receive reimbursement for adults.
Simasko said if parents use their own money to pay for their children and then later receive Medicaid benefits, the government will call it a “gift” and penalize the parents.
Medicaid typically has a five-year lookback period from the date of application to prevent applicants from gifting assets to meet Medicaid asset limits. Money given as a high school graduation gift, a car donated to a local charity, or money paid to a personal care assistant without a formal contract are some examples that could be considered violations and disqualify you.
Adults only:Caregivers pay as much as $7,200 out of pocket, and the new bill would provide a tax break.
Can nonprofits help?
Experts said that in the United States, aid is left to nonprofit organizations.
For example, the AACY identifies young caregivers from age 6Number Siskovsky said the program improves children’s academic performance, helps them develop caregiving skills, mental health and connections with others like them, “so they know they’re not alone.”
AACY has “helped me in a lot of ways: mental health, tutoring, computers. They also have activities you can join or sign up for,” Thompson said. “Sometimes we go to camps to learn life skills and we visit college campuses.”
She also met her best friend there. “I don’t actually have any friends that go to the same school as me,” she says. “A group tried to attack me, so I told the principal, and now I’m on my own path.” She says the AACY students are more like her, “more open and polite. They’re respectful, they’re rude, and they really know how to communicate.”
AACY’s “job is to prevent that trauma and help the kids of today and tomorrow,” Siszkowski said. “What people don’t realize is that investing in this demographic is going to help the future workforce, and if kids enjoy what they do, they can go into medicine like I did, as a nurse.”
A study funded by the Bill & Melinda Gates Foundation found that 22% of young people who drop out of school do so to care for family members.
“When they drop out of school, it affects not just you and your family but society as well,” Siszkowski said, noting they are more likely to have low incomes, addiction problems or teen pregnancy.
What can families do?
Once in this situation, families have few options: “If your house burns down, you can’t get home insurance,” Simasko said.
But if you’re still young and healthy, he says, here’s how you can plan.
- Long-term care insurance can help pay for long-term care costs, but it needs to be purchased while you’re young and healthy, otherwise it can get very expensive and premiums can rise.
- Hybrid life insurance pays out of the death benefit if you need long-term care, and out of the higher life insurance benefit if you don’t.
Medora Lee is USA TODAY’s money, markets and personal finance reporter. Contact her at mjlee@usatoday.com. You can also subscribe to our free Daily Money newsletter, which delivers personal finance tips and business news every Monday-Friday morning.
