By Janice Lynch Schuster
For better or worse, Twitter can change the world. I got a whiff of that potential last spring,while participating in a regular Twitter chat (#eldercarechat), someone raised (Tweeted?) the question of what we want government to do to improve thelives of the nation's 60 million caregivers, and added that weneeded something like a PeaceCorps for family caregivers. That idea resonated with me—and with what I myself need at thisjuncture in my life. My young adult children, five between the ages of 19 and 23, struggle to find work—regular work, much less meaningful work—so that they can pay their bills, including college tuition and loans.
My 92-year old grandmother has moved to Alaska to be with my aunt, and spends many of her days alone, her mind still longing for human connections, her body unable to gether there. What if we could buildsomething akin to the Peace Corps,a national program that could simultaneously address a spectrum of issues, such as workforce development, economic security, intergenerational respect, skillbuilding, and national service?
What if a program existed that could, for instance, employ my 20-something kids, rely on the skills and experience of retirees, like my own 69-year-old parents,and provide companionship to mygrandmother?What if we had a CaregiverCorps? I tweeted. Within a day, I had launched a petition to the White House calling for Americato create such a Corps. Within a month, the New Old Age blog of The New York Times had featured the idea.
Even now, late summer, the idea continues to be discussed: mentioned in the Times, and talked about online. Moving from something as ephemeral as a Tweet to somethingas enduring as a national program, of course, will take more than a season. To that end, I have spent subsequent months writing about the idea for various online platforms, and networking with individuals and organizations who are intrigued by the possibility. Anne Montgomery, my colleague at the Center for Elder Care and Advanced Illness at Altarum Institute and a veteran Hill staffer, has done the same.
Making a reality of my "I'd like to teach the world to sing" vision will require engaging the support of stakeholders nationwide, learning more about current nationalservice programs aimed at servingvulnerable people, and attendingto the myriad political and publicpolicy concerns the program engenders.
Why We Need a Caregiver Corps
Several demographic trends point to a future that will leave families and their beloved elders overwhelmed, exhausted, and bankrupted by the challenges of living with old old age—that is, living past 80—with multiple chronic conditions that will, no matter what they do, kill them. In any given year, some 60 million Americans serve as family caregivers to another adult, someone who is either old, disabled, or both. (And millions more care for children and young adults who live with serious disabilities, and face even more challenges in terms of education, employment, and so on.)
These families will run square into a medical system that is not prepared to care for them in the ways they need most. These individuals might sometimes need rescue and cure—but they will more often need long-term supports and services, and help with things like transportation, hygiene, and food. And while they'll have plenty of access to ICUs and new hips and knees—they will be shocked and disheartened by the costs of all the things they will need to pay foron their own: private-duty nurses, for instance, and home care; transportation and food; and skilled nursing care.
Unless these families spend-down to become Medicaid beneficiaries or have adequate long-term care policies, their costs will be out of pocket. And those costs will be beyond reach for most middle-class Americans. In the meantime, the social services agencies meant to serve aging Americans continue to be devastated by short-sighted budget cuts. Sequestration alone, one estimate suggests, will eliminate 800,000 Meals on Wheels in theState of Maryland. Demographics will stymie our ability to respond to these needs. In short, the future will include fewer people to provide the hands on care that aging adults will need.
The nation faces a profound shortage of people trained in geriatric care, from geriatricians to nurses to direct care workers.These shortages stem, in part, from the relatively low pay geriatricians earn, and the outright unlivable wage direct care workers receive. By one estimate, by 2030, when all of those Boomers are in their dotage, there will be one geriatrician for every 20,000 older adults.
A Caregiver Corps: Hope—and Help—for Us All
What's a country to do? Launch a Caregiver Corps, a program modeled on similar valuable, successful, and long-lived efforts, such as the Peace Corps, AmeriCorps, VISTA, and Teach for America. The program could recruit volunteers: high school graduates not trained for the workforce; college graduates facing a tough economy and huge undergraduate debt; and older adults, those healthy enough to want to remain in the workforce and contribute to others' wellbeing.Volunteers could sign up for a year or two. In exchange for their service, they could earn tuition credits to cover the cost of college; they could receive some degree of loan forgiveness, to lessen their burden of debt; they could be paid a stipend that acknowledges the value of their work. They could be assigned to community-based organizations that serve older adults, such as Area Agencies on Aging, non-profit healthcare institutions, social services agencies, and others.They would not have to travel far, or even leave home, to serve as volunteers.
Every community in America will face the inescapable challenge of caring for its frail elders. In fact, every community could tailor its volunteer opportunities to meet its own most pressing needs—it could recruit volunteers whose specific skills and interests align with what the community wants. Volunteers could apply for positions that appeal to their own interests, strengths, and experiences, for instance, and develop accordingly.
While volunteers could offer enthusiasm, compassion, and insight, they could also learn the kinds of skills required to carefor an older adult and his or her family. They need not ever actually use apply those skills in their real world, day-to-day assignment, but they could certainly come to understand the extent of what it means to have those skills, and what it takes to work in a position that requires so much of its workers. Some volunteers could learn about the public policies that affect that care.
Others could acquire medical and nursing skills—the kind of skills family caregivers use routinely in their daily routine. Many could be exposed to older people, and bridge the generational gap that splits our country on this demographic. In the end, they might even be inspired to pursue a career in one of the caring professions whose workers will be essential to how we collectively experience aging. In many ways, we will have to make it up as we go along—wes imply do not have any experience of living with so many old people,all at one time, all over America.In the past, few of us had anyexperience with this phase of life.In the future, almost all of us will.Transforming personal experience into something upon which to buildprograms that serve a collective good is essential to forging a future we can live with. Finding ways toengage and support people whohave the skills, resources, andmotivation to help us in everyone'sself-interest.
The question before usis simply how.In months ahead, Anne Montgomery and I will continue to explore ideas, issues and challenges in conversation with many colleagues around the country. We are beginning to collect stories and information about the myriad community-based organizations now underway nationwide, and would be delighted to learn more about what your organizations are doing.
To join this conversation, please email me at Janice.lynchschuster@altarum.org, or simply "Like"Caregiver Corps on Facebook,the easiest way (for now) to keep pace with what we are doing. To learn more about this project in the context of our larger organization, please visit our website.
Janice Lynch Schuster writes about aging, caregiving, and end-of-life issues, and is a co-author of an award-winning book on the topic, Handbook for Mortals:Guidance for People Facing Serious Illness (Oxford UniversityPress, 2012). She is a frequent contributor to The Washington Post. This post originally appeared in the July-August 2013 online edition of the American Bar Association’s publication, “Bifocal.”
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