How good was 2010 to family caregivers? Well if you factored out the protracted budget crisis in the states, it was a pretty good year. Two landmark pieces of legislation set the pace: the Patient Protection and Affordable Care Act (PPACA) and the Caregivers and Veterans Omnibus Health Services Act. We have also gathered other noteworthy developments in our report: “Family Caregiving 2010: Year in Review.”
PPACA included family caregivers in 14 sections and recommended representation on 6 advisory committees. Many quality improvements in health care system delivery, emphasis on preventive care for Medicare beneficiaries, medical care homes, accountable care organizations and targeted transitional services from hospital to home means better quality care for families and those for whom they care. Passage of the Community Living Assistance Services and Support act (CLASS) means that for the first time, all Americans will potentially have access to long term care insurance through their workplace.
The Caregivers and Veterans Omnibus Health Services Act contained a key provision to provide to caregivers of vets post 9/11, payment for care provided, access to health insurance and wrap around support services including respite for those who have left their jobs to care for their family member. The VA administration is moving forward to implementing consumer-directed home and community based services and just launched a National Caregiver Call Center, staffed by licensed clinical social workers, a first in the country. The VA may well set the pace in caregiver programs and policy in the future.
Personal stories abounded in 2010 with first person accounts such as Jonathan Rauch’s poignant and sometimes wry account of caring for his father in Washington DC. Last year I had the pleasure of getting together with Jonathan for coffee and can attest to the heartfelt anguish of caring for his father and his bewilderment on why it was so difficult to figure out what to do. Perhaps we really should require all folks over the age of 40 to take an eldercare class as he suggests in his article, “Letting Go of My Father” in the March 2010 issue of Atlantic Monthly. It is true: folks like me can have all the statistics in the world but Jonathan’s account makes it real for everyone – especially policy makers.
These are just a few of our “Best Of” Awards – our completely personal, tongue-in-cheek staff picks of advances made in 2010. Please enjoy!
“Best Of” Awards for 2010
The “Best Research on Family Caregivers” award is shared between two studies:
The Elder Care Study: Everyday Realities and Wishes for Change published by the Families and Work Institute, this in-depth study provides excellent quantitative and qualitative data on caregivers. The authors find that an estimated 42% of working adults have served as caregivers for an older adult within the past five years. Make sure to read the dedication – it encapsulates why we do what we do.
Caregivers of Veterans – Serving on the Homefront published by the National Alliance for Caregiving, this study of veteran caregivers highlights important characteristics of veteran caregivers and is especially relevant given the passage of the Caregivers and Veterans Omnibus Health Services Act that mandates the creation of a caregiver program for veterans of wars after September 11th.
The “Best Personal Account of Caregiving” award is a tie between:
Jonathan Rauch, for his poignant account of becoming a caregiver for his father. While we recognize that women are more likely to be caregivers, Rauch connects his caregiving experience and that of others within the broader context of our nation’s failure to better support family caregivers in their roles. Atlantic Monthly “Letting Go of My Father”
Katy Butler’s June 2010 article in the New York Times magazine, “What Broke My Father’s Heart.” This article captured the experience of the author’s mother as a caregiver to her 85-year-old husband who was kept alive with a pacemaker. Butler captures her individual experience and relates it to the broader, societal questions about how our health care system approaches end-of-life care.
The “Most Significant Piece of Legislation” award is given to the Affordable Care Act because of its many provisions to support family caregivers. Or to be exact, the 14 sections that mention inclusion of family caregivers. Increasing quality care, evidence-driven health outcomes and prevention measures are but a few of the advances within the ACA. And the inclusion of the CLASS program means for the first time, potentially all Americans will have long-term care insurance available through their workplace.
The “Most Progress in Supporting Caregivers” is given to the Veteran’s Administration, which is creating a family caregiver support program as a result of the passage of the Caregivers and Veterans Omnibus Health Services Act. In signing the law, President Obama noted that caregivers of veterans, “…put their own lives on hold, their own careers and dreams aside, to care for a loved one. They do it every day, often around the clock…it’s hard physically and it’s hard emotionally. It’s certainly hard financially. And these tireless caregivers shouldn’t have to do it alone.”
The VA also operates a Veteran Directed Home and Community-Based Services (VD-HCBS) program at 21 VA Medical Centers (in 14 states) that allows Veterans of all ages to manage their own flexible spending budgets by hiring the services that they need (including hiring friends/family). In October, the VA announced that it is contracting with the National Resource Center for Participant-Directed Services as it expands this program to an additional 14 states in 2011.
The VA also recently launched a toll-free National Caregiver Support line (1-855-260-3274) with licensed clinical social workers who will answer questions, listen to concerns, and connect caregivers to their Caregiver Support Coordinator at their local VA Medical center. More information is also available at a new VA website.
With all of these programs moving forward quickly, the VA may well set the pace for policy and programs for supporting caregivers in the country.
The “Most Relevant Piece of Research for State Policymakers Facing Medicaid Budget Crunches” award is given to the authors of “Raising Premiums and Other Costs for Oregon Health Plan Enrollees Drove Many to Drop Out.” The longitudinal study of changes to Oregon’s Medicaid program was featured in the December issue of Health Affairs (Volume 29, Number 12). The authors find that a 2003 redesign of the program with increased cost-sharing led to a 77% disenrollment rate over a two-year period with 80,000 participants leaving the plan.
While we originally envisioned a “Stingiest State of the Year Award,” there were too many good candidates for us to select a winner. Instead, we are presenting the “Best Disseminators of Budget Information” award, which is a tie between:
The Center on Budget and Policy Priorities (CBPP) for their November 2010 report: “An Update on State Budget Cuts: At Least 46 States Have Imposed Cuts That Hurt Vulnerable Residents and the Economy.” CBPP’s timely and focused reports on state budgets and the cuts made to health, education, and social service programs helps to inform a wider audience about the effects these cuts have on real people.
The Public Policy Institute at AARP for their report: “Weathering the Storm: The Impact of The Great Recession on Long-Term Services and Supports.” This comprehensive report provides an in-depth analysis on long-term services and supports which are paid for through Medicaid and are likely targets for budget cuts as states continue to balance strained budgets.
The “Most Relevant and Engaging Blog for Caregivers” award is given to “The New Old Age,” published in the New York Times. This blog provides an interactive forum to discuss a number of aging and caregiving issues, recent topics include the costs of institutional care and navigating family relationships in the context of family caregiving.
The “Best Unsung Policy Blogger Hero” award is given to Chris Langston for his posts to the Hartford Foundation’s blog, “Health AGEnda.” Blog postings written by Chris during 2010 analyzed some of the most pressing issues facing care for the aged, including coordinating care and paying for long-term care.
The “Best Advocacy” award is given to “Come Care with Me Days” sponsored by Paraprofessional Health Institute Massachusetts. Through this campaign, a state senator and representative spent the day with direct care workers to gain a “hand-on” understanding of the importance of their work. Elected officials in Iowa and Pennsylvania also participated in this initiative. The experience of spending a day with a caregiver will likely remain with elected officials when they are voting on legislation and program budgets for programs that serve patients, direct care professionals and family caregivers.