As soon as 12-year-old Aleisha Thompson wakes up, she prepares her mother’s medicine.
Then she gets ready for school. She makes sure her mother eats before heading 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 suffers from numerous health problems, including nerve and bone problems, poor vision due to her diabetes and a “very high” white blood cell count that doctors are still trying to determine. Her health, which has deteriorated over the past two decades, prevents her from caring for her children as mothers usually do.
Instead, the roles are reversed in her home and, quietly, in millions of others across America, putting financial and emotional strain on families and children, health care experts say.
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“Young caregivers are not on people’s radar,” even though they are growing in number, said Connie Siskowski, founder of the American Association of Caregiving Youth (AACY), a nonprofit organization, which advocates and supports young carers.
How many youth leaders are there?
An estimated 5.4 million children under the age of 18 provided care to parents, grandparents or siblings with chronic illnesses or functional decline in 2019, up from about 1.3 to 1.4 million in 2005, according to reports from the National Alliance for Caregiving and others.
But those numbers are a “gross underestimate,” Siskowski said. “I think it’s at least 7.5 million, conservatively.”
An aging population, increased drug and alcohol use, mental health issues, shorter hospital stays and long COVID have likely increased children’s need for help at home, experts say.
Additionally, “sometimes families don’t talk about it because they’re afraid that if people knew, the child might be removed from the home,” she said.
Why are more young people taking on caregiving responsibilities?
Home care and nursing homes are hard to find and unaffordable for most, especially if you’re still relatively young, experts say. At 49, for example, Boatley could need care for another 30 years or more.
“Everyone lives a very long time, but not necessarily in better health,” said Patrick Simasko, an elder law attorney and financial advisor at Simasko Law in Mount Clemens, Michigan.
Most people also don’t want to live in a nursing home away from their family for so many years, he said.
At the same time, “no child in the United States should have to drop out of school or life to care for family members.”
Is there government assistance for families and children?
“There is literally no government assistance when it comes to benefits,” Simasko said.
President Joe Biden took executive actions last year to expand care and raise wages, but none of them helped young caregivers.
Other countries like the United Kingdom and Australia recognize “young carers” through laws and policies and offer allowances, Siskowski said. The unpaid work of young carers is estimated to be worth more than $8.5 billion a year, she said.
In the United States, Medicare does not pay family members to provide care, and low-income families on Medicaid can only be reimbursed for adults.
If parents use their own money to pay for the child and then receive Medicaid benefits, the government penalizes the parents by calling it a “gift,” Simasko said.
Medicaid generally has a five-year lookback period from the date of your application to prevent applicants from donating assets to reach the Medicaid asset limit. Money given toward a high school diploma, a vehicle donated to a local charity, or payments to a personal care assistant without a formal contract are examples of what could be considered violations and disqualify you.
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Can Nonprofits Help?
In the United States, aid is left to nonprofits, experts say.
For example, AACY identifies young caregivers of 6th and helps them develop their caregiving skills, mental health and connections to others like them so “they know they’re not alone,” Siskowski said.
AACY “has helped me with a lot of things: mental health, tutoring, a computer, and they have activities we can attend and sign up for,” Thompson said. “Sometimes we have a camp and learn life skills or visit college campuses. »
She also met her best friends there. “I actually don’t have any friends who go to my school,” she said. “A group tried to jump me, and I told the principal, so I’m staying in my own lane.” She said she prefers the AACY kids who are more like her and “much more open and polite.” They show respect towards others, are not rude and know how to communicate very well.
AACY’s work “is about trying to prevent this trauma, to help children today and tomorrow,” Siskowski said. “What people don’t realize is that investing in this population can both help the workforce of tomorrow and, if kids enjoy what they do, they can access to health care, as I did as a nurse.
A study funded by the Bill and Melinda Gates Foundation found that 22 percent of young adults who dropped out of school did so to care for a family member.
“If they drop out of school, society is affected as well as you and your family,” Siskowski said, noting that they will be more likely to have low income, addiction problems or teenage pregnancies.
What can families do?
Once faced with this situation, families have few options. “You can’t get homeowners insurance when your house is on fire,” Simasko said.
But if you’re still young and healthy, he says, you can plan with:
- Long-term care insurance to help pay for assisted care, but you should purchase it when you are young and still healthy. Otherwise, it is extremely expensive and premiums can increase.
- Hybrid life insurance, which covers long-term care if you need it from your death benefit or from a larger life insurance benefit if you don’t need it.
Medora Lee is a money, markets and personal finance reporter at USA TODAY. You can reach her at mjlee@usatoday.com and subscribe to our free Daily Money newsletter for personal finance advice and business news Monday through Friday mornings.