Family Caregiver Alliance's Policy Digest

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

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April 18, 2012

Volume XII, Number 8

I nthis issue section head

State Legislation, Policy & Reports 

  1. CA:  Medi-Cal Caregivers Have Low Incomes, Less Access To Healthcare  More...
  2. OH: Three Area Agencies On Aging, Five Hospitals Awarded Funding For Transitions Program  More...
  3. LTC Ombudsman Focus In Iowa, Florida, And Kansas  More...

Federal Legislation, Policy & Reports 

  1. New Administration For Community Living Combines Aging And Disability More...
  2. National Alzheimer's Project Act Advisory Council Holds Fourth Meeting  More...
International News 
  1. Ireland: Family Carers Worry About Planned Cuts To Home Help Hours  More...
  2. Canada: Quebec Home-Care Policies Analyzed By Ombudsman  More...
  3. Canada: Reports Suggest Home Landscape Is "Seniors In Need And Caregivers In Distress"  More...

Research Reports & Journal Articles

  1. Study: Hospital Costs Are Highest After Dementia Diagnosis But Before Nursing Home More...
  2. Two Reports Focus On Caregiver Credits And Paid Family And Medical Leave More...

Conferences & Trainings

  1. Webinar: Transitions From Hospital To Long-Term Care In Norway, May 2, 3-4pm (EST)  More...
  2. Funding Opportunity: "What's Working" With Engaging Volunteers In Aging Network  More...
  3. Scholarships For 6th National Conference For Caregiving Coalitions More...
  4. Grant Opportunity For Implementing Evidence-Based Caregiver Support Programs  More...

Funding, Media & Miscellaneous 

  1. FCA's "Best of" Awards For 2011  More...
  2. High School Senior Will Be Allowed To Walk After Caregiving Absences Are Excused  More...
  3. Interview With Herb Sanderson About Advocating Inside And Outside The State System More...

Research Registry  

  1. Family Caregiver Study  More...

If you are interested in having your registry listed, please contact  


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An analysis from the UCLA Center for Health Policy Research compared data on paid caregivers for Medi-Cal recipients, unpaid caregivers, and non-caregiving adults.  Of the estimated six million California caregivers, about 450,000 are paid for their services, and about two-thirds of them (290,000) are paid Medi-Cal caregivers.  The authors found that Medi-Cal caregivers were almost twice as likely as non-caregiving adults to lack health care insurance (31% vs. 18%).  In addition, the average monthly income for a paid Medi-Cal caregiver is $1,970, vs. $4,222 for a caregiver who is not compensated for the care they are providing. The California Budget Project also released a county-by-county analysis of Governor Brown's proposed elimination of domestic and related care services for most In-Home Supportive Service (IHSS) participants. If approved, the change would result in 9 to 14 fewer hours per month on average, and a reduction in state spending of $207 million, and a loss of $424 million in county and federal funds, "for a total reduction of $631 million."  On a related note, during a budget hearing last week, staff for Subcommittee #3 recommended against the proposed elimination of the California Caregiver Resource Centers. For more information, visit:

UCLA CHPR: "Hidden in Plain Sight: California's Paid Medi-Cal Caregivers Are Vulnerable" 

CBP: "The Governor's Proposed Budget Would Reduce In-Home Supportive Services for 254,000 Low-Income Seniors and People with Disabilities" 

California Caregiver Resource Center Update 


The Pomeroy Daily Sentinel reports that the Centers for Medicare and Medicaid Services (CMS) recently awarded funding to a collaborative effort focused on patients with Acute Myocardial Infarction (heart attack), Chronic Obstructive Pulmonary Disease (COPD), Coronary Artery Disease, heart failure, or pneumonia who are being discharged from the hospital.  The effort will target a 26-county region that includes parts of rural Appalachia, and will work to reduce unnecessary readmissions while lowering Medicare costs.  Nurses and social workers from the Area Agencies on Aging will use the Care Transition Intervention program developed by Eric A. Coleman, MD, MPH.  For more information, visit:

The office of long-term care ombudsman has been the focus of recent media coverage in three states. 
In Iowa, the Des Moines Register reported that Governor Terry Branstad's recent executive order moving the state's long-term care ombudsman back to the Iowa Department of Aging caught advocates by surprise.  In 2010, the U.S. Administration on Aging ordered the director of the aging department to change a policy instructing the ombudsman to refrain from voicing opinions on federal and state legislation.   
In Florida, the Associated Press reports a circuit judge ruled that a lawsuit by Brian Lee, the state's former long-term care ombudsman, can move forward against the state and two nursing home and assisted living membership organizations.  Since being fired by Florida Governor Rick Scott, Lee has established a non-profit, Families for Better Care.
In Kansas, the Kansas City Star reports that long-term care advocates are concerned over Governor Sam Brownback's recent appointment of Barbara Hickert as the state's long-term care ombudsman.  Hickert is a former nursing home administrator. Mark Miller, the vice president of the National Association of State Long-Term Care Ombudsman Programs, suggested that it was rare for a person from the nursing home industry to be appointed to this position, and explained "I can't think of a single colleague."  For more information, visit:


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New Administration For Community Living Combines Aging And Disability


On Monday, HHS Secretary Kathleen Sebelius announced that the new Administration for Community Living (ACL) would combine the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities into a single administration.  The announcement cites a goal of allowing all Americans, including people with disabilities and seniors, to live at home with the supports they need.  Kathy Greenlee will serve a dual role as the Administrator of the ACL and as Assistant Secretary for Aging. For more information, visit:

HHS: "A Statement from Secretary Sebelius on the Administration for Community Living" 

Administration for Community Living Website 


National Alzheimer's Project Act Advisory Council Holds Fourth Meeting


Three subcommittees (Clinical Care, Long-Term Services and Supports, and Research) reported their recommendations yesterday during the fourth meeting of the National Alzheimer's Project Act (NAPA) Advisory Council.  The meeting was streamed live, and family caregivers and the impact Alzheimer's and related dementias has on them was frequently mentioned at the meeting.  The recommendations from the committees are available on the NAPA website, and FCA submitted comments related to the caregiver module within BRFSS, Adult Day Services, and funding levels for the National Family Caregiver Support Program.  For more information, visit:

NAPA Website 

FCA Comments 



international news section head image

Ireland: Family Carers Worry About Planned Cuts To Home Help Hours

The Irish Times recently profiled Bill Guest (aged 71), a retired garda who has a rare degenerative condition and his wife, Kay Guest (aged 58), who is his primary caregiver.  Bill is 224 pounds, and six feet tall but has lost all mobility, and his wife explains that she is totally reliant on home care assistance with lifting, washing, clothing and feeding him. The Times reports that the Health Service Executive (HSE) is planning to reduce the number of home help hours by 500,000 and is seeking to close 500-900 public nursing home beds.   In Ireland, 11.7% of the population is over the age of 65, and 28% of this age group lives alone.  Ireland's dependency ratio (sum of people outside working age, both old and young) is 49.4%.  For more information, visit:

Irish Times: "'He doesn't want to go to a nursing home. He's much happier at home'" 



Canada: Quebec Home-Care Policies Analyzed By Ombudsman  


The Montreal Gazette reports that while the Quebec government instituted a policy favoring home care over institutional care in 2003, a recent report calls into question if the government is fulfilling this commitment.  Raymonde Saint-German, the provincial ombudsman, wrote a report after a rise in complaints from people who rely on home care.  Examples in her report included a "heavily-handicapped man" who needs 38 hours of help a week, but was allocated 20 and a blind woman's home care being cancelled when a clinic decided she could move around her apartment without assistance. For more information, visit:


Montreal Gazette: "Quebec seniors bear brunt of home-care cuts"   

Canada: Reports Suggest Home Landscape Is "Seniors In Need And Caregivers In Distress"


The Montreal Gazette reports that a report released this week by the Health Council of Canada finds that supports for seniors and their caregivers may be inadequate.  The report analyzed data from five regions (Nova Scotia, Ontario, Manitoba, British Columbia and Yukon) and found that one-third of the seniors in the sample have complex health needs, "often involving both a physical disability and cognitive impairment such as dementia..."  However, seniors with complex needs are only receiving a few more hours than seniors with moderate health needs.  An estimated 40-50% of the caregivers are distressed, reporting feelings of stress, anger, and depression.  Recommendations include regular assessment of the seniors and their caregivers to ensure an adequate level of support, which could include additional hours of home care or identifying long-term care facilities. The Gazette reports that of countries monitored by the Organisation for Economic Co-operation and Development (OECD), "Canada has one of the larger gaps between spending on long-term care and home care, 0.96 % of GDP for long-term care and 0.21% of GDP for home care."  For more information, visit:


Montreal Gazette: "'Seniors in need and caregivers in distress': national report" 

Health Council of Canada Report: "Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada?" 



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Study: Hospital Costs Are Highest After Dementia Diagnosis But Before Nursing Home


A study in this month's issue of the American Journal of Alzheimer's Disease and Other Dementias examined Medicare costs for people with Alzheimer's Disease and Related Disorders (ADRD) and find that hospitalization costs (due to ADRD) are higher prior to the person becoming a permanent nursing home resident.  Medicare spent, on average, $29,743 per patient on ADRD-related hospitalizations for patients who had been diagnosed with ADRD, prior to them becoming nursing home residents.  After they became nursing home residents, the costs dropped to below $19,000.  The authors suggest that the study's finding have implications for healthcare providers, especially those who will be participating in Accountable Care Organizations, where reimbursements will be grouped together.  For more information, visit:

Brown University Press Release: "Pre-nursing home hospitalization of dementia patients incurs sizable Medicare costs" 

AJADOD: "Road to the Nursing Home Costs and Disease Progression Among Medicare Beneficiaries With ADRD" (Abstract is free) 


Two Reports Focus On Caregiver Credits And Paid Family And Medical Leave


The Center for American Progress recently released two reports addressing the economic and employment challenges faced by family caregivers.  


The first paper, "The Effects of Paid Family and Medical Leave on Employment Stability and Economic Security", proposes a program known as Social Security Cares, a nationwide program to provide paid family and medical leave.  Currently, only California and New Jersey offer Paid Medical Leave programs.  

The second paper, "Protecting Workers and Their Families with Paid Family Leave and Caregiving Credits" focuses on what the author labels the "quadruple whammy" of caregivers bringing home less income in the short run, being less likely to earn promotions (and raises) at work, having less access to workplace retirement programs, earning less in Social Security retirement benefits, and accumulating less lifetime earnings.  The authors recommend implementing caregiver credits to limit the current penalty for time out of the workforce or to recognize time spent caregiving for purposes of earning credits towards Social Security retirement income.  For more information, visit:


CAP: "The Effects of Paid Family and Medical Leave on Employment Stability and Economic Security" 

CAP: "Protecting Workers and Their Families with Paid Family Leave and Caregiving Credits"    



Conferences and Trainings section head image 



The National Research and Training Center for Personal Assistance Services (PAS Center) is sponsoring a webinar on May 2 from 3:00-4:00PM (Eastern) focused on transitions from hospital to long-term care in Norway.  The presenters include Christina Foss, RN, PhD, and Dag Hofoss, PhD, both visiting professors from the University of Oslo Department of Nursing Science, as well as PhD candidate Line Kildal Bragstad, OT, MSc.  The presenters will describe their work on discharge experience and discharge planning, and patients' and family caregivers' experiences.  Please note: There is no pre-registration for the seminar, but the presenters recommend visiting a few moments beforehand to download the webinar software.  For more information, visit:


PAS Center Webinar




The National Volunteer Resource Center for Engaging Volunteers in the Aging Network is currently accepting submissions from the aging network for the "What's Working" initiative, focused on engaging volunteers in the aging network.  The program is only open to the Aging Network and participants need to answer 30 questions about their organization's work with volunteers. The deadline is this Friday, April 20 (midnight EST).  Sixteen total honorees will be selected, including eight in the rural community category (awards of $6,000-$10,000), six in the city/county category ($8,000-$15,000), and two in the state category ($12,000-$25,000). For more information, visit:


What's Working 



Scholarships For 6th National Conference For Caregiving Coalitions


The National Alliance for Caregiving is awarding ten scholarships for representatives to attend the sixth annual conference for caregiving coalitions, which will be held at the n4a conference this summer.  The scholarship provides one-day registration and up to $850 for travel, hotel and per diem for a coalition member.  Applications are due by May 16th.  For more information, visit:


National Alliance for Caregiving 



Grant Opportunity For Implementing Evidence-Based Caregiver Support Programs


The Rosalynn Carter Institute Caregivers Program is currently accepting initial interest forms for a grant for non-profit community-based organizations that are implementing an evidence-based caregiver support program.  Funding priorities include caregivers of loved ones with Alzheimer's, and caregivers of soldiers with traumatic brain injury, post-traumatic stress disorder, and/or physical disability.  Applicants must implement either RCI Reach or the Wounded Warrior Family Caregiver Program.  Five grants of $150,000 at each site will be awarded, four for RCI Reach and one for the Wounded Warrior Caregiver Program. An initial interest form is due this Friday, April 20th.  For more information, visit:


The Rosalynn Carter Institute Caregivers Program 



Funding, Media & Miscellaneous banner

FCA's "Best of" Awards For 2011


Family Caregiver Alliance continued its "best of" awards for 2011 work focused on family caregivers.  Awards include the "Doctor Knows Best," "Actually, the Sky is Falling" and "Middle-Class Caregiver Squeeze."  While the awards are somewhat tongue-in-cheek, they also acknowledge some of the many powerful stories that people shared in 2011 about their caregiving experiences, as well as research on programs that support family caregivers and their loved ones.  For more information, visit:

2011 Best Of Awards in Family Caregiving

Family Caregiving 2011: Year in Review Report 


High School Senior Will Be Allowed To Walk After Caregiving Absences Are Excused


The Carrollton school district in Ohio announced on Monday that it would allow Austin Fisher, a senior, to walk for his graduation.  Fisher, who works two jobs, had 16 absences during his senior year.  The absences were for Fisher to care for his mother, who has terminal breast cancer.  According to Fisher, he was originally told by his principal that he would not walk because of the absences.  However, an online petition, started last week, and signed by over 100,000 people in about six days, may have prompted an announcement on Monday that Fisher will in fact be allowed to walk with the rest of his class.  School Board members reported that they were unaware of the situation until it gained national media coverage.  In a 2011 interview with Aging Today, Connie Siskowski, the Executive Director of the American Association of Caregiving Youth, cited research that there are 1.3 to 1.4 million youth serving as caregivers.  A 2006 report by the Bill and Melinda Gates Foundation suggested that 22% of high school dropouts leave to provide care for a family member.  For more information, visit:


Yahoo Sports: "Austin Fisher will walk: Under media pressure, Carrollton superintendent reverses decision" (includes video interview)

Online Petition: "Allow Austin Fisher to walk and graduate with his 2012 class after caring for his sick mom" 

Aging Today: "Shining a Light on Young Caregivers" 


Interview With Herb Sanderson About Advocating Inside And Outside The State System


The Spring 2012 issue of the American Society on Aging's quarterly journal, Generations, is focused on the topic of "30 Years of HCBS: Moving Care Closer to Home."  An interview with Herb Sanderson, who served seven years as a AAA director, and 24 years as the director of the Arkansas Division of Aging and Adult Services, gives an inside view on policymaking and advocacy at the state level.  In reference to a tobacco tax that would fund senior services, Sanderson explains, "I could not publicly get out front on the issue, as the tax increase was not part of the executive branch budget package. However, I played an active role behind the scenes and joined the fight. What great fun! The aging network took over the capitol and bested some of the most powerful lobbyists ever to walk Arkansas' legislative halls. At the session's conclusion, the statewide newspaper declared "Older People" as Lobbyist of the Year."  To read the full interview, visit:


Generations: "Improving Long-Term-Care Supports Means Advocating Inside and Out" 

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Research Registry section head


Family Caregiver Study  

Researchers at the University of California, San Francisco (UCSF) are interested in learning about the experiences of family caregivers. What we learn from this study may help improve support for future caregivers.

  • We are looking for current/ former, local/long-distance caregivers of an older adult (age 65+).
  • You will be interviewed for 45 minutes over the phone and asked to describe your needs as a caregiver, and your feelings about your relative's health, care needs, and concerns about the future.
  • You will receive a $25 check for your time.

Please contact Julie Thai at (415) 221-4810 x6496 or for more information or to schedule an interview.  For more information visit:


FCA Research Registry 



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

2012 Family Caregiver Alliance. All rights reserved.

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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Caregiving PolicyDigest is a publication of the National Center on Caregiving at Family Caregiver Alliance, 785 Market Street, Suite 750, San Francisco, CA 94103.

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