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, Shelia Boatley, 49, has diabetes and is disabled. She 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 the cause of. Her declining health over the past few decades has meant that she is no longer able 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 children, medical experts say.
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“Young people becoming caregivers is a growing problem, but it’s not getting attention,” said Connie Siszkowski, founder of the nonprofit. American Association of Caregivers Youth (AACY)is an organisation that advocates for and supports young carers.
How many young carers do you have?
Ann An estimated 5.4 million children In 2019, the percentage of children under the age of 18 who were caring for a parent, grandparent, or sibling with a chronic illness or impaired functioning was: Approximately 1.3 million to 1.4 million That number increased in 2005, according to reports from the National Alliance for Caregiving and other sources.
But that figure is “a huge underestimate,” Siszkowski said. “I would 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 life to care for a family member.”
Is there government assistance for families and children?
“There are literally no government assistance payments,” Simasko said.
President Joe Biden introduced executive actions last year aimed at expanding care and raising wages, but none of it helped younger caregivers.
In other countries England and Australia Siszkowski said “young carers” should be recognised and paid for through laws and policies. Unpaid youth care work is estimated to cost more than $8.5 billion a year, 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.
If parents use their own money to pay for their children and then later receive Medicaid benefits, the government will punish the parents by calling it a “gift,” Simasko said.
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, assistance 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, and “allows them to know they’re not alone.”
AACY has “helped me in a lot of ways: mental health, tutoring, computers, and they also have activities that 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 my school,” she says. “A group of people tried to attack me, so I reported them to 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 work is “to prevent trauma and help the kids of today and tomorrow,” Siszkowski said, “What people don’t realize is that investing in this demographic can help the future workforce. And if kids enjoy what they do, they can go into medicine like I did as a nurse.”
a Research funded by the Bill & Melinda Gates Foundationion It found that 22% of young people who dropped out of school did so to care for a family member.
“When they drop out of school, it affects not only you and your family but society as a whole,” 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 [email protected]. You can also subscribe to our free Daily Money newsletter, which delivers personal finance tips and business news every Monday-Friday morning.
