Family Caregiver Alliance's Policy Digest

Policy Digest Newsletter
A Newsletter of FCA's National Center on Caregiving

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July 26, 2012

Volume XII, Number 15

I nthis issue section head

State Legislation, Policy & Reports 

  1. ME: Governor Wants To Reduce Number Of Medicaid Beneficiaries, Citing Recent Supreme Court Ruling  More...
  2. WA: Seattle City Council Endorses Resolution To Support Transforming Long-Term Care  More...

Federal Legislation, Policy & Reports 

  1. Coalition Of 3,000 Organizations Urges Congress To Avoid Sequestration  More...
  2. Critics Suggest That Duals Demonstration Is Moving Too Fast And Is Too Large  More...
  3. Report Compares Medicare To Private Insurance, Draws Implications For Medicare Reform  More...
International News 
  1. Canada Survey Provides Snapshot Of Canadian Caregivers More...

Research Reports & Journal Articles

  1. New Fact Sheet Focuses On Importance Of Caregiver Assessments In Long-Term Care  More...
  2. Study: Screening And Hiring Practices For Home Health Agencies Vary Considerably More...
  3. Study: Latino Elders Disproportionately Affected By Elder Abuse  More...

Conferences & Trainings

  1. New Online Tutorial Provides Overview Of Long-Term Care Structure  More...
  2. Application For 2012 Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Awards Now Available  More...
  3. Webinar: Funding Sustainability For Lifespan Respite Program, Part II: Examples From The States  More...
  4. Grant Opportunity: Focus On Aging And Disability Networks And Managed Care  More...

Funding, Media & Miscellaneous 

  1. Pew Survey Finds Caregivers Rely Heavily On Internet  More...
  2. AARP PPI:  600,000 Americans Currently In Foreclosure Are Aged 50+  More...
  3. Pilots In Bay Area Focus On Palliative Care In The Home  More...

Research Registry   

If you are interested in having your study listed, please contact  Please also check out FCA's new "Graduate Student Section" of our Research Registry. 


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The New York Times reports that Maine Governor Paul LePage views the recent Supreme Court decision on the Affordable Care Act as grounds to tighten his state's eligibility rules for Medicaid. LePage had originally intended to seek a federal waiver for his plans to eliminate Medicaid for about 20,000 Maine residents and to tighten eligibility rules for programs that elderly and disabled residents use to help pay for prescription drugs and health care.  However, he has recently suggested that the Court's ruling means he will instead seek to simply amend the state's Medicaid plan.  Not surprisingly, federal officials do not share LePage's viewpoint, and HHS Secretary Kathleen Sebelius sent a letter to all 50 governors earlier this month informing them that the ruling did not "affect other provisions of the law."  For more information, visit:

New York Times: "Maine Debate Hints at Rift on Medicaid After Ruling" 


Earlier this month, the Seattle City Council unanimously approved a resolution supporting Caring Across Generation's platform of improving long-term care while also providing quality jobs.  In a press release about the resolution, Washington Community Action Network noted that Senator Harkin (D -IA) introduced a "Sense of the Senate" (SR 453) earlier this year with the same policy goals.  His resolution, SR 453, cites the need for improvements to the working conditions of direct care workers, including workforce training and paths for advancement as part of a strategy to improve access to quality long-term care for seniors and people with disabilities.  The Seattle Chapter of SEIU (SEIU Healthcare 775NW) has sponsored "Walk A Day in A Caregiver's Shoes" in which city council members have spent the day with direct care workers and their care recipients.  For more information, visit:


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Coalition Of 3,000 Organizations Urges Congress To Avoid Sequestration


A coalition of almost 3,000 organizations signed on to a letter to Congress earlier this month asking leaders to avoid cuts to nondefense discretionary (NDD) cuts that would potentially be implemented in January 2013.  The coalition notes that a wide range of organizations signed on to the letter, with advocates from health, education, law enforcement, science, housing, workforce, transportation and faith communities urging Congress to take a more balanced approach.  Spending on NDD accounted for 4.3% of the US Gross Domestic Product in 2011, but under the Budget Control Act, this spending would be cut to 2.8% by 2021.  Advocates explain that these cuts would ultimately mean fewer teachers, drug and food inspectors, fewer first responders, and fewer scientific innovations. Sixty delegates from the various organizations are serving in the "NDD Summit" and will help coordinate an education effort aimed at the public and policymakers.  The content of the letter is one page, and the remaining 62 pages is the list of state and national organizations that signed onto the letter. For more information, visit:

Letter to Congress from 3,000 Advocacy Organizations 


Critics Suggest That Duals Demonstration Is Moving Too Fast And Is Too Large


A recent article in Politico discusses concerns from several key organizations about the federal government's efforts to change how care is provided to people who are dually eligible for Medicare and Medicaid.  While most people agree that the current system of care for duals is fragmented and expensive, advocates have begun questioning if a demonstration program under CMS that aims to shift this population into managed care is moving too quickly and has grown too large for a program that was originally intended as a demonstration, but now has 15 states and the potential for 3 million enrollees- more than 1/3 of the total duals population.  Critics range from Senator Jay Rockefeller (D-WV), who thinks the design is more concerned with saving money than improving care, to the American Medical Association, whose members are concerned about the program cutting doctor reimbursements as the main strategy for saving money.  A representative from Medicaid Health Plans of America said he supports the demonstration.  For more information, visit:

Politico: "Groups to CMS: Slow down" 


Report Compares Medicare To Private Insurance, Draws Implications For Medicare Reform

A recent study in Health Affairs analyzes the experience of people with Medicare within the broader context of changes included in the Affordable Care Act, policy proposals to dramatically change Medicare (for example into a voucher program that would only pay a set amount of costs), and the ongoing issue of high costs associated with Medicare. Using data from a 2010 national health insurance survey of over 4,000 adults, the authors compare Medicare beneficiaries to nonelderly adults coved by employer-sponsored plans and nongroup insurance.  The authors find that for people aged 65 or older, those in private Medicare Advantage programs were less likely than traditional Medicare beneficiaries to have premiums and out-of-pocket costs that were more than 10% of their income. However, Medicare Advantage enrollees were more likely to give poor ratings to their insurance and to experience access problems due to cost. While 8% of Medicare beneficiaries aged 65 or older rated their insurance as fair or poor, the number were much higher for people with employer insurance (20% who rated their insurance as fair or poor), and for people who purchased their insurance on the individual market (33%). Compared to nonelderly adults with employer-based coverage, Medicare beneficiaries were more likely to have access to a medical home (primary care doctor who knows their medical history and can help coordinate care), which other research has linked to fewer medical errors, and higher rates of preventative care. The authors conclude that policymakers considering changes to Medicare should address how changes could affect quality, access to care (like a primary doctor), and cost of care.  For more information, visit:


Health Affairs: "Medicare Beneficiaries Less Likely To Experience Cost- And Access-Related Problems Than Adults With Private Coverage"  




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Canada Survey Provides Snapshot Of Canadian Caregivers

A recent brief from Statistics Canada analyzes data from the 2008/2009 Canadian Community Health Survey-Healthy Aging, which is a cross-sectional survey of 30,865 people aged 45 or older who live in private occupied dwellings in the ten provinces. Thirty-five percent of Canadians aged 45 and older reported serving as caregivers, and 57% percent of Canadian caregivers are women.   Caregivers are more likely to be married or in a common-law relationship than non caregivers (78% vs. 71%); were more likely to have a higher household income, and to have postsecondary education. Almost 75% of caregivers are caring for somebody who is at least 75 years old, with parents and parents-in-law representing 56% of care recipients. Only 14% of care recipients live in the same home as their caregiver, with 70% living in another private household, and 12% living in institutional care. The most common type of assistance was transportation (39% provide); household activities (20%); and personal care (15%).  About one-third of caregivers report durations of caregiving for five years or more, while about one-third had been caregiving for less than a year.   In terms of caregiving challenges, 17% of respondents reported that the most negative aspect was that it was emotionally demanding; 12% report not having sufficient time for themselves or family; 10% cited stress, and 7% reported fatigue.  However, 95% of caregivers report positive aspects, including personal satisfaction (30%); enjoyment from providing assistance (26%); and feeling closer to the care recipient (19%). For more information, visit:

Statistics Canada: "Informal caregiving for seniors" 




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New Fact Sheet Focuses On Importance Of Caregiver Assessments In Long-Term Care


A new fact sheet from AARP's Public Policy Institute focuses on the importance and benefits of high-quality caregiver assessments.  The focus on caregiver assessments takes place within a broader context of budget deficits threatening funding for programs like Medicaid, and the "gray tsunami" of 19,000 baby boomers turning 65 every day for the next 19 years.  In addition, programs like the State Balancing Incentives Program, included in the Affordable Care Act, reward states financially for shifting greater resources toward home and community-based services, a shift that may create an even greater reliance on families providing care.  While some long-term care programs include an assessment of the caregiver(s), many are focused solely on the ability to provide care, instead of also addressing the caregiver's own health and well-being. The authors explain that assessing caregivers and connecting them to tailored services leads to better quality care as well as a higher quality of life for the caregiver.  There is also some research suggesting that supporting caregivers can delay institutional care.  A study in Washington State is currently measuring whether assessing and supporting caregivers can lead to delayed or avoided Medicaid-funded long-term care. AARP PPI and the National Center on Caregiving at Family Caregiver Alliance are currently collaborating on a project to create an inventory of caregiver assessments within Medicaid HCBS Waivers.  For more information, visit:

AARP PPI: "Assessing Family Caregiver Needs: Policy and Practice Considerations" 

PolicyDigest: "WA: Study: Will Expansion Of Family Caregiver Support Program Reduce Medicaid Costs?" 


Study: Screening And Hiring Practices For Home Health Agencies Vary Considerably

A study in the most recent issue of the Journal of the American Geriatrics Society addresses the screening and hiring practices used in home health care agencies in seven large states.  For the study, 180 home care agencies were contacted by an interviewer who posed as a prospective client looking for services for an older relative.  The results from the interviews suggest that the screening, hiring, and training processes vary widely, and in many cases, could be strengthened considerably.  Fifty-six percent of agencies use federal criminal background checks, while less than a third use drug testing.  A posting about the study on the New Old Age blog noted that only 17% tested potential caregivers' knowledge about the job and its requirements, and no agencies assessed candidates' health literacy.  The lead author explained that while there are good agencies, there are also bad agencies interested solely in making a profit and that regulation of this industry (especially if the agency is non-Medicare certified or licensed by the state) is nonexistent.   She suggests a series of questions for families to ask agencies about their screening, hiring, training, and supervision of employees. For more information, visit:


Journal of the American Geriatrics Society: "Hiring and screening practices of agencies supplying paid caregivers to older adults" (abstract is free)

New Old Age: "Who's Watching Mom?"

FCA Fact Sheet: Hiring In Home Help   



Study: Latino Elders Disproportionately Affected By Elder Abuse


A new study in the Journal of the American Geriatrics Society examined the prevalence of elder abuse for elder Latinos as well as the rate at which the abuse is reported. Promotores (Spanish-speaking community health organizers) went door-to-door on randomly selected blocks in predominantly Latino neighborhoods in Los Angeles and interviewed Latinos aged 65 or over for the study. Forty percent of the Latino elders reported that they were victims of either abuse or neglect in the past year, but only 1.5% had reported the abuse to authorities. The authors find that 10.7% of elders had been physically abused (with more than half of the victims indicating that it was severe physical assault), 9% reported sexual abuse, 16.7% report financial exploitation, and 11.7% reported neglect by their caregiver. Elderly Latinos who had been in the U.S. longer were more likely to be victims of abuse or neglect. For more information, visit:


Eurekalert: "Elder abuse affects Latinos disproportionately"  





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A new tutorial from explains the basics of the U.S. long-term care system in shorter formats that also touch on the key policy issues. The tutorial features 18 short (30-60 seconds) chapters on the fundamentals of long-term care, including recipients, settings, Medicaid, Medicare, and dual eligibles.  Chapter 15 focuses on the role of family caregivers in the nation's long-term care system.  The text of the narrative can be accessed, as well as the PowerPoint slides for each chapter. For more information or to watch the tutorials, visit:


KaiserEDU: "Long-Term Care 101"




With continuing support from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance (FCA) is pleased to oversee the annual Caregiving Legacy Awards program now in its fifth year. The program stimulates innovation in the field of Alzheimer's disease caregiving by recognizing and rewarding those efforts which lead the way in addressing the needs of Alzheimer's disease caregivers.  The deadline to apply is August 17, 2012.  For more information, visit:


Award Application 



Webinar: Funding Sustainability For Lifespan Respite Program, Part II: Examples From The States


ARCH Respite is hosting a webinar on Tuesday, August 14, from 3:00 to 4:30PM (EDT) that will focus on ways to create sustainable funding plans for Lifespan Respite Programs.  This is the second webinar in this series, and will also touch on highlights from the ARCH Guide to Federal Funding and Support Opportunities for Respite.  The webinar will be most useful for Lifespan Respite grantees, but will also be applicable to people who are interested in sustainable funding for respite programs.  For more information, or to register for the webinar, visit:


ARCH Webinar: Funding Sustainability for Lifespan Respite Programs, Part II: Examples from the States 



Grant Opportunity: Focus On Aging And Disability Networks And Managed Care


A recently announced grant opportunity will focus on the emergence of managed care in the long-term services and supports systems and how the aging and disability networks can play strong leadership roles.  The funding announcement is for one award that includes two primary tasks.  The first task is to design and implement training and technical assistance for aging and disability networks on issues related to managed long term services and supports.  The second task is to assess the aging and disability networks' involvement in managed long term services and supports.   The Administration for Community Living "anticipates that the successful application for this announcement will represent a collaborative effort of organizations with diverse areas of expertise and target populations including older adults, people with physical disabilities, people with intellectual and developmental disabilities."  Applications for the $250,000 grant must be submitted by August 1, 2012.  For more information, visit: 


Building the Business Capacity of Aging and Disability Community-Based Networks for Managed Long-Term Services and Supports 




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Pew Survey Finds Caregivers Rely Heavily On Internet


A recent report from Pew Internet analyzes data from a survey of 3,000 adults, 30% of whom were caregivers.  Seventy-nine percent of caregivers report access to the internet, and 88% of this group report that they look online for health information, a much higher percentage than other internet users.   Not surprisingly, caregivers were more likely than other internet users to report that their last internet search for health information was on behalf of another person (67% vs. 54%).  Caregivers were more likely to read another person's personal health story online and more likely to follow a friend's personal health experiences via social media.  Offline, caregivers are more likely to ask for help from friends or family members (70% vs. 47% for non-caregivers).  Caregivers are also more likely to use the internet to seek out reviews of drugs, doctors, medical facilities as compared to non-caregivers.   For more information, visit:

Pew Internet: "Family Caregivers Online"

Family Caregiver Alliance Facebook Page 

Family Caregiver Alliance Blog 


AARP PPI:  600,000 Americans Currently In Foreclosure Are Aged 50+


A report from AARP's Public Policy Institute finds that the mortgage meltdown is affecting hundreds of thousands of older Americans who have already lost their homes, are in foreclosure, or who have negative equity and are therefore at greater risk of foreclosure.  Since 2007, over 1.5 million older Americans have lost their homes to foreclosure.  As of December 2011, there are currently 600,000 older Americans in foreclosure, with another 625,000 mortgages that are 90 days or more days delinquent on paying their mortgage. The authors cite earlier research which found that homeowners who are delinquent on their mortgage have higher rates of mental health impairment, were more likely to develop symptoms of depression, and were likely to cut back on purchasing food and prescription medications.  Recommendations to solve the crisis include allowing principal reductions (Fannie Mae and Freddie Mac currently do not allow this); mediation programs between the homeowner and their banks (which currently exist in 19 states); and more lease-to-own type programs for homes which have been repossessed but are vacant.  For more information, visit:


AARP PPI: "Nightmare on Main Street: Older Americans and the Mortgage Market Crisis"


Pilots In Bay Area Focus On Palliative Care In The Home


Lisa Krieger, a staff writer for the San Jose Mercury News, who earlier this year wrote an extensive series called "The Cost of Dying," recently wrote about palliative care and several pilot programs in the San Francisco Bay Area that bring palliative care into people's homes.  Marilyn Cronin, who is suffering from liver failure and lung disease, is profiled for the dramatic improvements to her quality of life as a result of a palliative care pilot sponsored by the Palo Alto Medical Foundation.  Through this program, a nurse practitioner met with Cronin, helped her create a care plan that included drugs to address her pain, breathlessness, and nausea.  A walker, shower seat and portable toilet have helped, as well as a referral to Alcoholics Anonymous, and assistance with payment for Cronin's caregiving partner.   Krieger explains that under the current fee-for-service structure of the U.S. medical system, time spent coordinating care isn't necessarily reimbursed by Medicare.  However, there are changes being considered in Medicare that would improve reimbursements for time spent coordinating complex chronic care.  For more information, visit:


Mercury News: "Relief at the Door" 



To find caregiver support services in your state, visit FCA's Family Care Navigator

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The National Center on Caregiving at Family Caregiver Alliance works to advance the development of high-quality and cost-effective policies and programs for caregivers in every state in the country. The National Center is a central source of information and technical assistance on family caregiving for policymakers, health and service providers, program developers, funders, media and families. For questions or further information about the National Center on Caregiving, contact or visit the Family Caregiver Alliance website at

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