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This is the second in a series produced under a USC Annenberg Center for Health Journalism 2020 National Fellowship, which focuses on the stories of vulnerable communities. Click here for the first story on how COVID-19 has affected young adults "aging out" of the foster care system.

Gail Engel, 65, has helped to raise her grandson Bryson, who has autism and other neuropsychiatric disorders, since the day he was born. She became his primary caregiver when he was 2; she and her husband eventually gave up their retirement plans and adopted him.

Now he's 13, and on top of parenting a teenager with special needs, Engel has become his de facto schoolteacher, counselor, and lunch lady because of COVID-19.

Engel is one of 2.4 million U.S. grandparents with guardianship over their grandchildren who are juggling the stressors of the pandemic -- remote learning, social isolation, and balancing a budget -- all while battling the constant threat of COVID-19 infection.

Engel, who lives in Colorado, has an enlarged heart and a compromised immune system, putting her at higher risk for complications from the virus. Her husband is, too: he works in construction and has chronic obstructive pulmonary disease.

"I'm scared to death," Engel told MedPage Today. "I physically cannot do the things that need to be done ... I stay busy because I need to not think about this."

Children raised by kin often have better outcomes than those raised by non-related foster parents, but the challenges can be more daunting insofar as they don't get the same financial and social support as formally licensed foster parents. Many grandparents who are raising grandchildren do so completely outside of the child welfare system, without access to social services or government benefits at all. About one-fifth .

For each child living with relatives in formal foster care, an estimated 20 children live with kin outside of the system. In a of about 600 grandparents and other caregivers conducted in June, 55% of respondents said they were not involved in the child welfare system.

About 38% said they were struggling with mortgage or rent payments, according to the survey, which was conducted by the advocacy group in partnership with Collaborative Solutions and GrOW (Grandfamilies Outcome Workgroup).

Some 43% said they were afraid to leave home to buy food, and 32% said they had to rely on food pick-up sites, but that those sites had at times run out of food.

As with the formal foster care system, Black and Native American children are disproportionately represented among grandparents raising grandchildren, representing 25% and 8% of "grandfamilies," but roughly 13% and 2% of the population, respectively.

Benefits of Kinship Care

Kinship families with stable homes in which they are more likely to feel loved, maintain their cultural identity, and eventually find a permanent home, according to Jaia Peterson Lent, MSW, deputy executive director for Generations United.

"A child, a young person, may age out of a system," she said . "But they never age out of a family."

Victoria Gray, a foster parent, adoptive parent, and kinship care , agreed.

"In foster care, [if] a foster parent doesn't like their attitude ... they make a phone call, say 'This child has to leave' ... [and] children can be bounced around several times," Gray told MedPage Today. "But in kinship, they're with aunts and uncles and cousins and grandma and so they continue their culture. They continue their bonding with family."

Grandparents raising grandkids still face seemingly insurmountable hurdles, Engel attests.

As the founder and administrator of the , a nonprofit created to connect grandparents and other relatives raising kin in Colorado, Engel receives daily phone calls from caregivers struggling to enroll a child in the local school, or find clothes for a toddler who arrived at his grandparents' doorstep the night before.

Throughout the pandemic, Engel has juggled running her nonprofit, keeping her house in shape, and caring for Bryson, who has gone back and forth with virtual and in-person learning in the past several months.

"A child with autism, a child with trauma, can't do this Zoom thing," Engel said. "They hate looking at themselves. ... He might as well not have been in school."

In August, the school system brought Bryson and a handful of other students with special needs back to school. The rest of the students returned, one grade at a time, in the weeks that followed.

By mid-October, a student in Bryson's special education class tested positive for COVID-19, landing Bryson in quarantine. A doctor recommended isolating him in his room, but Bryson has cognitive function disorder, attachment disorder, and sensory integration issues in addition to autism, so keeping him completely isolated is not realistic. He thrives on routine, Engel said.

"The kid needs a hug every morning," Engel said. "If he doesn't get a hug, he's a huge mess."

Engel gave him his own cup to drink from and his own blanket for when they watched TV together, and she made an extra effort to wipe down all the counters and surfaces.

But Engel is constantly afraid of getting sick, remembering a time a few years ago when she thought she might be having a heart attack. When she asked Bryson to run and get help, he froze.

"Because of his cognitive disorder, he couldn't process it," Engel said. She could see the cogs in his brain turning and him thinking, "I know something is going to happen and it's going to be horrible, and I don't know how to handle it."

Limited Benefits for Grandparents

Kinship caregivers and grandparents raising grandchildren do not always get the same societal support as non-relatives raising children in the formal foster care system.

Many other grandparents are raising grandchildren completely outside of the child welfare system and do not have access to social services or government benefits at all.

Gray, founder and executive director of Phoenix-based advocacy nonprofit , has fostered 41 children, including several grandchildren, in kinship and foster care.

In 1993, she became her granddaughter's guardian in kinship care, and also got certified to be a foster parent to her granddaughter's brother, who was not related to her but had the same mother as her granddaughter.

As a non-relative foster parent for the boy, she received nearly $500 per month, but for her granddaughter, the foster care system paid her about $17 a month.

"They both needed diapers, they both needed shoes, they both needed clothes, but for some reason ... [my granddaughter was] devalued because they were with kinship," Gray said.

Nearly 30 years later, the problem persists. In Arizona, for example, if a child needs to be removed from a biological parent, a non-relative foster parent receives around $600 per month for raising that child, while a relative would be paid around $40 per month, Gray said.

Almost half of all children placed with families in Arizona are placed in kinship care, so if all kinship caregivers were paid what other foster parents earn, "it would literally bankrupt Arizona," Gray said.

But the amount provided kinship caregivers makes it harder on those families, she said.

"The grandparents are tapping into their savings accounts, they are running up their credit card," Gray said. "They are trying to keep the family afloat at $1.40 a day, and it shouldn't be that way."

Although kinship placements are typically less disruptive than traditional foster care placements and have been linked to better outcomes for youth, another advantage to kinship care is that it saves states money because kinship families receive fewer services, Gray said.

"We understand that the foster parent has been trained," she said, which she likens to getting a degree that grandparents, aunts, and uncles don't have. "But if it's still safe for them to be with their aunts and uncles, with family, then give them half the amount, $10 a day... but $1 a day?"

Other caregivers miss out on some governmental assistance because of complex family relationships.

In Colorado, grandparents are eligible for about $128 per child per month in support payments from the Temporary Assistance for Needy Families (TANF) program, Engel said.

For the Engels, TANF was never an option because it would have meant collecting child support from their daughter, who didn't have the money. Forgoing those supports made it easier for her and her husband to make the decision to adopt Bryson.

Said Engel, "$128 versus knowing that he's gonna be with me, I could give that up."

But many grandparents cannot, and as a result, even grandparents with so-called "permanent custody" must sit with the fact that a child's parent can come back every two years and ask for the child's return, she said.

Resources for Grandfamilies

In an , a publication focusing on the child welfare and juvenile justice systems, 108,426 children in foster care were not receiving monthly foster payments as of 2017. That's up 32% since 2011, with the majority of these children primarily living in unlicensed kinship care.

In addition to TANF, some grandparents raising grandchildren are eligible for programs such as Supplemental Nutrition Assistance Programs (SNAP), regardless of whether they are in the formal system, said Joseph O'Leary, 76, who leads a local support group in Massachusetts. O'Leary is also raising his own 7-year-old grandson with his wife.

"The good news is, there are lots of different things that are available," O'Leary told MedPage Today. "The bad news is, the guardians have trouble understanding it, knowing it is available, and weaving their way through the maze of bureaucracy to get it."

During the pandemic, many grandparents have taken emergency family leave to stay home with their grandchildren to educate them, Engel said.

But some grandparents' incomes are so low that they don't file tax returns, and the government has no idea they're raising a child because the child isn't claimed as a dependent. As a result, grandparents aren't receiving one-time stipends they might have gotten through pandemic relief funds, which amount to roughly $500 per child, Engel noted.

"They don't get that unless they know to go to the computer and know to go to the IRS [website] and let them know," Engel said. "We don't know how many grandfamilies are not getting that relief either."

Grandparents who don't file returns also can't receive the tax credits available for low-income people, Engel noted.

The , established in 2000, provides monies for states to support families providing in-home care for older members. It allows states to spend up to 10% of these funds on families in which the caregivers are 55 or older. But few states use that much to serve so-called "grandfamilies."

Some states have implemented kinship navigator programs, which act like a concierge service for caretakers, offering a point of contact to help connect them to resources. Lawmakers in Congress introduced a handful of bills this summer including the "" and the "" aimed to expand kinship navigator programs.

Bette Hoxie, 74, has guardianship of her 5-year-old grandson and has been working as a kinship specialist at Adoptive and Foster Families of Maine to provide for her eight-member multigenerational household throughout the pandemic.

Many grandparents she works with are also juggling relationships with their own children, who often have substance use disorders, mental health conditions, or developmental disabilities that contributed to children going into their grandparents' care in the first place.

"Being a kinship care provider puts you in this awkward, sort of divided loyalty role," Hoxie told MedPage Today. "You really want your child, who is the parent, to be successful, yet you have to make those boundaries and clear distinctions about what is safe for the grandchild or child you are caring for."

Still a Daily Struggle

Many grandparents find themselves thrust unexpectedly into the role of full-time caregivers without the benefit of formal custody arrangements.

Mel Hannah, 82, lost his daughter, Ashley, 37, in May from heart failure. Ashley also had early stage throat cancer and diabetes but her death was sudden. She was getting ready for work one morning, when she started to feel so sick she couldn't stand up. An ambulance took her to the hospital, but Ashley died the next day.

Now, the Hannahs are left to support Ashley's children, the oldest of whom is 5, on their own, getting by on monthly Social Security payments and donations from Ashley's other relatives and friends. The boy's father also helps out buying shoes, clothes and toys.

"I don't want to create a perception that, all of a sudden, these three boys are a tremendous financial burden, but the reality is it's all incremental," Hannah told MedPage Today.

In speaking with Gray, a kinship specialist, Hannah learned that he and his wife could apply for SNAP or "food stamps" because, legal custody or not, the children are living with him and his wife. Gray also connected the Hannahs with one-time rent and utility assistance through the Salvation Army.

When a parent dies, Gray told them, children under 18 are eligible to receive Social Security benefits, which could be as much as several hundred dollars per child.

Hannah has not spoken with the boys' father about those benefits but he anticipates that he and his wife will, at some point, need to discuss a more formal financial arrangement with him.

In addition to financial support, Gray let the Hannahs know their legal rights to the boys were limited. If the children's father knocked on the door, asking for them, the Hannahs would have to turn them over.

That was crushing news for Mrs. Hannah, Gray said. Many grandparents raising their grandchildren don't have the legal protection of permanent custody.

In addition to the financial strain and custody concerns, the Hannahs are trying to balance school and childcare for Blaze, Champ, and Phoenix -- all while coping with the heartbreaking loss of Ashley.

In lieu of a funeral, the family had a viewing at the mortuary, where everyone wore masks and stayed physically distanced. Her friends from work also met in a park and celebrated Ashley with photos and balloons.

"God willing, I do plan on having a memorial," Hannah said.

But Ashley's absence still weighs heavily on the Hannah family. Sometimes, one of Hannah's grandchildren will be playing outside, look up at a cloud, and say, "Is my mommy up there?"

"I know it's not gonna be good for me or the rest of the family if I'm in a constant 23 hour-a-day mode of ... only thinking about Ashley," Hannah said. "I have had other parents tell me, 'Mel, you don't get over it, you just get past it.'"

Although Hannah acknowledged that people may begin to question his ability to parent as he gets older, he said the question of what would happen to the children if he or his wife became ill isn't one he's wanted to even think about.

In the Generations United survey, 30% of respondents said they did not have a plan for their grandchildren if they died.

Hannah, who was the first African American elected to the Flagstaff, Arizona, City Council, said he was an "out-of-the-house father," when his own children were growing up. These days, he helps with the diapers and the bathing and taking his 5-year-old grandson to school.

Hannah and his wife have relatives nearby to step in when they need an extra hand, and the boys' father helps as well.

Many older caregivers are living in isolation, without familial support nearby. Those who do have nearby support systems have to balance the risk of infection with the need for assistance.

Joanne Clough, who began raising her 4-year-old granddaughter, Carter, after her daughter died from an overdose in 2016, watched friends slowly stop coming by after they learned of her daughter's death.

"The saddest thing about losing a child is, it's like a dirty little secret, that you're not really that much fun to be around anymore," Clough told MedPage Today. "A lot of people that you thought were your friends just stop doing things with you, stop really talking to you."

A single mother who had already raised two daughters of her own, Clough, 63, has multiple health issues, including heart disease, autoimmune issues, and a predisposition to bronchitis and pneumonia. She can no longer pick up her granddaughter, and has to sit in a chair to hug her.

It's also been a financial struggle to afford daycare so Clough could continue working as a lawyer.

The household has had a couple of COVID-19 scares, including one instance when Carter was sent home from daycare with a fever. Although her test results have all come back negative, Clough is terrified by the thought of contracting COVID-19 and leaving Carter behind.

But there's little distance between Clough and her granddaughter, who in the last year has taken to sleeping in her bed, pressing her foot into her all night "to make sure I'm still there," she said.

At the same time, the fear is what keeps her going.

"I used to have a lot of days where I would go to sleep and just wish I didn't wake up... because it's not easy," Clough said. "That's why I say [Carter] kind of saved my life -- because I can't give up."

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