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12-year-old Alesha Thompson prepares her mother’s medicine as soon as she wakes up.

Then she gets ready for school. Before going to the school bus stop, her mother makes sure she eats. She texts her mother around noon to remind her to take her medicine and eat between classes.

Thompson “eats” is important. “She must eat.”

Thompson’s mother, Shelia Boatley, 49, has diabetes and is disabled. She has been on disability since 2000, with multiple health problems including neurological and bone issues, poor vision from her diabetes and “severely elevated” white blood cell counts that doctors are still trying to figure out. Her declining health over the past two decades has prevented her from treating her children the way mothers do.

Instead, the roles are taking a financial and emotional toll on her family and, in silence, millions of other families and children across America, health experts say.

Although their numbers are growing, “caregiving youth are not on people’s radar,” said Connie Siskowski, founder of the nonprofit. American Association of Caregiving Youth (AACY)Supporting and advocating for young carers.

How many young carers are there?

An An estimated 5.4 million children. For parents, grandparents or siblings under the age of 18 who had chronic health problems or functional decline in 2019. About 1.3 to 1.4 million In the year 2005 from the National Care Service and other reports.

But those numbers are a “huge underestimate,” Siskowski said. “I think it’s at least 7.5 million, conservatively.”

Experts say an aging population, more drug and alcohol use, mental health problems, shorter hospital stays and longer Covid-19 have increased the need for children to help at home.

She also said, “Sometimes families don’t talk about it because they’re afraid that if people find out, it might take the child out of the house.”

Why do many young people take on caregiving responsibilities?

In-home care and nursing homes are difficult to find and unaffordable for most, especially if you’re still relatively young, experts said. At age 49, Botley, for example, may need care for another 30 years or more.

“Everyone is very tall, but not necessarily healthy,” says Patrick Simasko, Simasko Law of Simasko Law in Mount Clemens, Michigan.

Many people also don’t want to live in a nursing home away from their families for many years, he said.

At the same time, “A child in the United States should not have to interrupt education or life to care for family members.”

Is there government assistance for families and children?

“In terms of government benefits, there is nothing,” Simasco said.

President Joe Biden took executive action last year to expand caregiving and raise wages, but none of it helped young caregivers.

Other countries like Great Britain And Australia “Recognize young caregivers” through law and policy and provide payments, Siskowski said. She said unpaid youth caregiving labor is estimated at more than $8.5 billion annually.

In the US, Medicare does not pay for family members to provide care, and low-income families on Medicaid may only pay for adults.

If parents use their own money to pay for the child and later receive Medicaid benefits, the government can penalize the parents for calling it a “gift,” Simasco said.

Medicaid usually has a five-year look-back period from the date of application to prevent applicants from having to provide assets to meet Medicaid’s asset limits. A gift for a high school graduation, a vehicle donated to a local charity, or a payment to a personal care aide without a formal contract are examples that could be considered violations and qualify you.

For adults only: Caregivers spend $7,200 out of pocket. New bill offers tax relief.

Can nonprofits help?

Aid is a non-profit in America, experts say.

For example, AACY identifies young caregivers from age 6Th It helps them step up and build their caregiving skills, mental health and relationships with others like them so they “know they’re not alone,” Siskowski said.

“AACY has helped me with a lot of things: mental health, tutoring, computers, and they have activities that we can participate in and sign up for,” Thompson said. “Sometimes we have camp and learn life skills or visit college campuses.”

There she met her best friends. “I don’t really have any friends at my school,” she said. “A group tried to jump me, and I told the director, so I stayed in my lane. She said she prefers kids at AACY who look like her and are “very open and polite. They show respect for others, are not rude and know how to communicate properly.”

AACY’s job is to “try to prevent that harm, to help children today and tomorrow,” Siskowski said. You can enter.

A Research supported by the Bill and Melinda Gates Foundationion 22% of school leavers did so to care for a family member.

“If you drop out, society is affected, as are you and your family,” Siskowski said, noting that they often face low incomes, dependency problems or teenage pregnancies.

What can families do?

Once in the situation, families have a few options. “You can’t buy home insurance when your house burns down,” Simasco said.

But if you are still healthy and young, you can plan with this plan, he said.

  • Long-term care insurance can help pay for assisted care, but you should buy it while you’re young and healthy. Otherwise, it is very expensive and the premium may increase.
  • Hybrid life insurance that pays for long-term care if you don’t want death benefits or large life insurance benefits.

Medora Lee is a money, markets and personal finance reporter for USA Today. You can reach her at mjlee@usatoday.com and sign up for our Daily Money newsletter every Monday through Friday morning for personal finance tips and business news.