Like many working caregivers, Gail Engel of Loveland, Colorado, sees few good options for the fall. If she stays home to help her grandson interact with his special education teacher virtually, the loss of income will imperil the family’s financial stability. If she sends him back to school, she runs the risk he could return home with the virus that causes COVID-19.
“I don’t have much choice here, making a life or death decision,” said Engel, who leads the Grand Family Coalition, a nonprofit that trains and supports kinship caregivers.
Engel turns 65 just a few days before the school year begins on Sept. 1. She is especially worried because the disease ravaging the country has been most unforgiving to older adults, and she and her husband are both immunocompromised.
“If something happens to us, he will have no one,” Engel said.
In a news briefing convened by the national nonprofit Generations United on Tuesday, Engel and other caregivers across the country underscored the precarity kinship families are facing – and the need for hasty solutions.
Nationwide, more than 2.5 million children live primarily with relatives, a third of them with grandparents, according to the federal Administration for Children and Families. Many of these caregivers can’t distance themselves from young people for their own safety, yet they are keenly aware that they can only continue providing a safe and stable home if they stay healthy. After nearly six months fending for themselves, grandparents say they need more help to support the kids in their care, who are often particularly vulnerable due to histories of trauma or special needs.
“Many grandfamilies are now navigating two crises – the crisis that brought the kids into their care in the first place and the COVID-19 pandemic – and they’re having to do it alone,” said Jaia Peterson Lent, deputy executive director of Generations United.
In the vast majority of cases where children live with a relative, there is no formal child welfare case, so caregivers don’t receive the same monthly stipend that certified foster parents receive. They also lack access to a caseworker’s assistance. That means many grandparent caregivers must keep working or draw on their savings – even as their grandchildren’s needs escalate and their incomes remain fixed.
Sarah Smalls, 73, gave up her dream of retiring to the Caribbean 17 years ago when she took in her toddler granddaughter. She is now raising three teenage grandchildren in northern Virginia, two of whom have special needs. Smalls has had to borrow from her 401(k) to pay for things like a tutor for subjects they’ve fallen behind in. The children’s school district recently scrapped a plan to offer in-person teaching two days each week and went all virtual, making the burden on Smalls even heavier.
In many parts of the country, there are some resources available to relative caregivers, though they aren’t always easy to find or to apply for. Relative caregivers are eligible for a modest monthly grant toward the child’s food and clothing, and, in most states, they can seek help from a network of resource hubs known as kinship navigators. Peterson Lent, of Generations United, called on the federal government to make it easier for caregivers to qualify for these grants, and to strengthen its investment in the navigator programs, which remained flat from 2019 to 2020.
Relative caregivers also report widespread struggles with technology. And they have become frustrated with a lack of support from schools for students to study online, according to a recent survey of more than 200 caregivers by the Alliance for Children’s Rights, a California nonprofit that advocates for children in foster care.
Angie Schwartz, the organization’s vice president of policy and advocacy, called on schools and communities to find creative solutions to support children’s learning, like partnering with colleges or volunteer programs to offer virtual tutoring.
In Washington state, caregivers have asked for extra support from aides who could help monitor kids’ educational progress during the day, said Dawn Rains, chief policy and strategy officer at Treehouse, a nonprofit that provides learning support to foster youth.
Many grandparents are struggling now simply to afford basic needs, like food and in-person respite care. Without additional resources for these households, Rains said, some relatives may find they can no longer provide for the children in their care, putting them at risk of a damaging cycle of disruption. From March through June, about 1 in 10 foster youth Treehouse works with changed placements, more than in a typical quarter.
“We do think that that stress is leading to placement disruption because the caregiver’s circumstances have changed or because school provided respite,” Rains said. “A lot of parents are having really significant financial and emotional issues.”
Caregivers and their advocates say one of their top concerns is that after having gone virtual, schools are no longer delivering the same services for students with special needs or disabilities that were provided in the classroom before the pandemic.
The disruption in services has a disproportionate impact on foster youth, about 40% to 50% of whom have a diagnosed disability that qualifies them for special education, according to data from Washington, California and New York. A Treehouse survey found that more than a third of kids with disabilities hadn’t had access to their usual services since school buildings closed in March.
Since 1975, federal law has required schools to provide all students, including those with special needs, with a “free and appropriate public education.” But when the coronavirus suddenly shuttered schools in the spring, many states temporarily relaxed the timelines for districts to assess students with special needs and provide appropriate services.
Now, just 1 in 7 American parents report their children will attend in-person classes full-time this fall, according to a survey for The New York Times, and caregivers worry that kids with the greatest needs are being overlooked.
For Marisa Van Zile, a member of the Sokaogon Chippewa Band of Lake Superior Indians living in a rural area of Michigan’s Upper Peninsula, a return to in-person services can’t come soon enough. Her son, who she adopted as a baby after learning he was her cousin, has Duchenne Muscular Dystrophy and missed weeks of his usual occupational, physical and speech therapy in the spring.
Eventually, they were able to settle into a new routine of virtual services – an option unavailable to many in their rural school district, where a recent survey found just 20% to 30% of students have internet access at home. But when summer arrived, Van Zile was told she would need to drive her son nearly an hour each way to attend therapy. They decided continuing with regular appointments simply wasn’t practical.
Now, Van Zile is making the difficult choice to send her son to in-person kindergarten classes, hoping against hope he will stay healthy while getting the intensive services he needs.
“Our special needs children cannot be forgotten,” she said.