Family Caregiving Summit: Innovations Needed for Overlooked Groups of Caregivers

The good news: New York State has earned the first "Age-Friendly State" designation, said speakers at a recent family caregiving summit. The bad: much more needs to be done, particularly in helping isolated caregivers in rural areas, and children caring for siblings, sick parents, or aging relatives.

More than 70 participants from public, private, and nonprofit entities attended The Future of Family Caregiving Summit: Leading the Change, held November 28. The session was sponsored by AARP New York and the AARP Foundation, the New York State Department of Health and Office for the Aging, the New York State Health Foundation (NYSHealth), which hosted the event, and United Hospital Fund (UHF).

To encourage new solutions to the many vexing issues caregivers must wrestle with, New York State has just issued the Aging Innovation Challenge, said Danielle Greene, chief of staff for the New York State Department of Health. The Challenge offers a $50,000 prize for prototypes that will assist older New Yorkers and their caregivers in such daily activities as bathing or showering, dressing, using the bathroom, and eating. Innovators must submit written proposals by April 30, 2018.

Also focusing on innovative models for assisting caregivers was Elaine Ryan, vice president of state advocacy and strategy for AARP. She lamented the increasing isolation of many of the elderly, however, which she termed a public health crisis. “Our long-term care system isn't a system at all,” she said. Still, New York is more advanced than the other 50 states in policies and support for family caregivers, she noted, with the most comprehensive paid family leave law in the nation, effective January 1, 2018.

Carol Levine (at right) discussing the needs of child caregivers
“We tend to think of innovation as things done for the first time,” said Carol Levine, director of UHF's Families and Health Care Project and an organizer of the summit, speaking on a panel on “The Future of Caregiving.” Yet “there are also great ideas already in practice that need to spread.” She listed a number of examples—including hospital-based caregiver centers, older adult-focused emergency and acute care departments, and community paramedics who can better meet the needs of isolated older people in rural communities.

Innovations are especially needed, she noted, to address a generation of caregivers too often overlooked, despite their growing numbers—children. Unlike many other nations, the U.S. only considers those 18 and up to be caregivers. But more than one million children and teens ages 8 to 18 are known to take on challenging tasks to help a parent, grandparent, sibling, or other relative—and that number is almost certainly undercounted, since there has not been a survey of child caretakers in more than a decade. And as opioid addiction continues to claim so many parents, more and more children are being drafted into the caregiver role, Ms. Levine added.

Also on the “Future of Caregiving” panel was Deana Prest, aging services program analyst for the New York State Office for the Aging; David McNally, director of government affairs and advocacy for AARP New York; Maria Alvarez, executive director of State Senior Action Council; and Mark Kissinger, special assistant for long-term care at the New York State Department of Health.

Opening the summit was keynoter Richard Liu, MSNBC/NBC anchor, who offered a personal view of caregiving as he discussed his weekly trips from New York to San Francisco to help care for his father, who has Alzheimer's. His remarks resonated later in the meeting as a second panel focused on “Addressing the Needs of Family Caregivers.” Randi Kaplan, director of the Arthur D. Emil Caregiver Support Center at Montefiore Medical Center, funded in part by UHF, discussed the number of caregivers who come to the innovative resource center and find comfort as well as information. There are now three such centers in the Montefiore system, staffed by two social workers as well as trained volunteers.

Other panelists included Jasmine Pearlman, host of Cablevision's “Caregiving and You”; Sara Butterfield, senior director, Health Care Quality Improvement, IPRO; Isabel Ching, executive director, Hamilton-Madison House; and Robin Creswick Fenley, assistant commissioner, Bureau of Healthcare Connections, New York City Department for the Aging.

Beth Finkel, state director of AARP-NY, and David Sandman, president and CEO of NYSHealth, also addressed participants.

For more on young caregivers, read Carol Levine's August 2017 essay in Health Affairs, More Than 1 Million Young Caregivers Live in the United States, but Policies Supporting Them are Still Emerging.

Dec. 15, 2017
Focus Area
Quality and EfficiencyClinical-Community Partnerships
Family Caregiving