An estimated 5.4 million young carers at home lack support
Daniela Castro-Martinez remembers how devoted and active her mother was before she fell ill, giving a lot of attention to her only child.
“Every weekend, she took me to tennis tournaments. Sometimes they were an hour, two hours away. She would do it because she knew I loved the sport,” Castro-Martinez said. “She did everything for me and never complained about it.”
That was before Sandra Martinez was diagnosed with amyotrophic lateral sclerosis, or ALS. The disease is progressive and affects nerve cells in the brain and spinal cord.
Martinez lost her mobility around the time her daughter started high school. That’s when the roles essentially reversed and Castro-Martinez became one of her mother’s primary caregivers.
Castro-Martinez and her father often alternated preparing her mother’s meals and taking care of her personal hygiene.
“I used to feed her and brush her teeth, sometimes position her and put her to bed and everything,” Castro-Martinez said, adding that when her dad was away she had to take care of everything for them. Arizona House.
Castro-Martinez, now a high school student, is part of a growing population of young caregivers who help with daily care or provide emotional support to others living in their homes.
An estimated 5.4 million young people in the United States are caring for someone in their home, a number that researchers say is vastly underestimated.
They help care for parents with disabilities, siblings with chronic illnesses, or elderly relatives, and their challenges and experiences vary. Some studies suggest that many suffer from increased anxiety and depression, and for the most part resources are hard to come by.
“Being able to communicate with others who were in a similar situation might have given me more hope.”
Daniela Castro Martinez
For Castro-Martinez, while some of his peers worry about their Instagram likes, his high school career has been a balancing act between schoolwork and caregiving responsibilities. Very few teachers and classmates knew what she had been through until her mother died in June 2021. Castro-Martinez said she isolated herself at times.
“Being able to communicate with others who were in a similar situation might have given me more hope,” Castro-Martinez said.
Carol Levine is a home health care advocate who has championed support for young caregivers for nearly two decades. She said caregivers of young people struggle to find friends who can understand their situation.
“They don’t want to talk about it and they don’t get peer support, which could be a good source of support if everyone understood why you can’t hang out today,” Levine said.
When it comes to supporting caregivers, Levine said the focus is mostly on adults, as some families don’t disclose what their children are doing for fear they’ll be taken from the home.
But she said that wasn’t the answer.
“The answer is to provide enough support at home, so the young person can contribute meaningfully, but not be responsible for everything,” Levine said.
She added that the COVID-19 pandemic and the opioid crisis have increased the number of young caregivers and the need to pay attention to them.
Efforts to support young carers face challenges
There has been very little progress in establishing policies to support carers of young people around the world. National efforts have been made in the UK and Australia, but recognition of children as caregivers in the US is still emerging. There are currently only a handful of organizations that offer programs and services specifically for young carers.
The American Association of Caregiving Youth, or AACY, is one of them. Since the late 1990s, the organization has been advocating for recognition and providing support for young carers. Based in Palm Beach County, Florida, it’s the only one of its kind in the United States.
Founder Connie Siskowski said she became interested after a youth risk behavior survey found thousands of students in Palm Beach County were providing home care.
“And of those, more than one in three said they missed school, didn’t do their homework and had trouble concentrating,” Siskowski said.
The AACY Youth Support Project is designed to provide support both at school and at home. The program is personalized according to the needs of the individual. This may include tutoring, counseling, or connecting students to school supplies or food resources.
Not having a standard method for identifying caregivers of young people is one of the biggest barriers to providing support. Young caregivers remain absent from national surveys, barring anyone under the age of 18 from accessing federally and state-funded resources.
Although limited to its geographic area, AACY has developed a screening tool – a questionnaire to identify caregivers in their program.
Siskowski said the kids don’t self-identify and the partnership with the Palm Beach County School District was key.
“When you needed help, they were there.”
Amy Gafter, former AACY youth worker
“I think it’s important for them to be able to set the standard. And we look at that when we talk to people in other states to try to work with schools because that’s where are the kids,” Siskowski said.
The questionnaire was used to identify Abby Gafter, 21, an AACY graduate.
Gafter grew up in a multi-generational home caring for his disabled mother, grandmother and great-uncle who had chronic health issues. She said she thought she was the only child in her situation.
“I got involved in this program simply because in sixth grade in my English class, we took a quiz that said, ‘Do you take care of anyone? “, Gafter said. “And they said, ‘Hey, would you like to be part of this program where there are other people who are facing the same things as you?
Gafter remained on the program for six years. She received a tutor and participated in special events with other caregivers. She said the counseling and social-emotional support was what she valued the most.
“They were taking a class period, you know, twice a month, and they were just kind of asking, ‘How are you guys doing? Is everyone okay? Do you need help? Do you need something ?’ And usually the answer was no, but when you needed help, they were there,” Gafter said.
Each participant is paired with a staff member who makes regular home visits and is responsible for connecting students to support resources.
Gafter said her designated worker connected her with a palliative care counselor to help her grieve during her uncle’s declining health and eventual death.
“If it wasn’t for AACY, saying, ‘Hey, I want to connect you to these people,’ I never would have continued this connection that I always have,” Gafter said. “So I find them responsible for a lot of the relationships that I have.”
The AACY reports that approximately 90% of its participants stay in the program until graduation.
Support programs need to build trust with parents
There are barriers that make it difficult to replicate this model outside of Palm Beach County. The district is one of the largest in the country and many schools do not have the staff or resources to implement a youth care program.
The program serves approximately 500 to 600 students in 30 schools each year.
Cultural differences and general stigma can make the program a tough sell when parents are gatekeepers. Students may only participate with their parent’s permission.
Siskowski said you have to build trust with some families.
“A lot of our families no longer have (immigration) status. And so they have that extra layer of fear. Also, in some families there is a fear that the children will be taken away,” Siskowski said.
The school district does not track students in the program, which makes it difficult to measure the success of the program.
AACY measures its effectiveness based on graduation rates and collecting student feedback at the end of each year. They also look at the number of students who move on to the next grade rather than being retained. Siskowski said that in 2021, rates fell slightly, a drop she says is due to the pandemic and the challenges of virtual education.
She said they had created an alumni group, but did not yet have any official statistics. Nearly 2,000 children have completed the program since its launch.
Even on a small scale, the program has been well received by caregivers and their families.
Alina Rogazon says it has helped her son David – a 14-year-old carer for his sister, Rania, who was born with a congenital heart condition – by giving him outlets outside of his caring responsibilities.
“For a few hours, they could be children. It’s amazing,” Rogazon said.
This story was produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting on successful responses to social issues. The group is supported by the Solutions Journalism Network.
The collaboration’s first series, Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to the challenges faced by caregivers of older adults.