Ai-jen Poo and her grandmother play mahjong together. “That’s our thing,” she says, with a smile. “She lets me win once a year on my birthday.” Always ready with a laugh and a story, Poo’s 93-year-old grandmother’s mantra has been, “Laugh from your belly three times a day and you’ll have a healthy life.” Despite the laughter, her grandmother’s health began to decline and Poo realized that she and her family didn’t have a plan for her grandmother’s care. They got “lucky,” she recalls, finding dedicated home health care workers that allowed her grandmother to stay at home and improved her quality of life immeasurably.
But, as Poo said in yesterday’s opening keynote at Stanford Medicine X, “What’s become clear to me is that we as a country don’t have a plan, either.” Poo said, “My story is part of a larger story.”
There are “at least a 100 million people who are directly affected by the need for care in America,” Poo, a tireless activist for domestic workers rights and a renowned family care advocate, said. She called reinventing how we care for one another the “single most important opportunity of generations.”
“This is our moment to take caregiving from what has been a private, often isolated conversation into a national public conversation about the future,” Poo said, before outlining some recent wins. Nevada became the 8th state to pass a caregiver’s bill of rights, and this year Hawaii passed legislation to provide resources for working caregivers. The groundbreaking law provides family caregivers with up to a $70 per day credit to help pay for things like respite care, adult day care and ground transportation to help ease the burden of care and prevent burnout.
Poo went on to lay out her vision for a big, bold plan — including, for example, the creation of an infrastructure of caregivers and a Universal Family Care Fund that everyone contributes to and draws from to pay for child care, elder care or care for the disabled. Despite political divisions, she says that “care is one place where our interests truly come together. The need for care universally affects us all.”
While Poo focused on the need for sweeping change at a national level, a panel discussion later that afternoon focused on smaller ways to provide support for caregivers. There’s certainly great need for this: As Geri Baumblatt, an expert in patient engagement, said, “I know people that have lost their homes and their marriages because of intense caregiving situations.”
After Baumblatt’s father had a bout with a heart condition, sending her family into a tailspin, she realized there was a need for better resources to walk caregivers through the initial post-discharge period. Baumblatt is now helping design multimedia programs that provide both patients and caregivers with a series of 45 days of calls and animated videos which she hopes will lead to a lowering of rates of readmission. In addition, caregivers would be checked in on every two weeks to make sure that they’re not neglecting self care or struggling with depression.
Another panelist, Rajiv Metta, spoke about Atlas of Caregiving, which in partnership with the AARP, develops “care maps” — drawings of the people and services involved in a family’s caregiving situation that he says visually represent a caregiver’s needs. Metta keeps it simple: Stick figures represent family members, triangles represent professionals and houses represent facilities (like homes or assisted living facilities). It not only helps people identify where there might be gaps and where they need to ask for help but also shines a light on the collective needs of caregivers. “There’s a lot that we can learn from the community of caregivers,” he said. “The solutions will come from the community.”
From challenges to solutions, Poo summed up today’s discussions on the care crisis best: “The truth is if we are to care for everyone in this country who needs it, it is an all hands on deck situation.”