Family Caregiver Alliance
Volume XIV, Number 2, April 10, 2014

Are We At The Tipping Point on Policies for Family Caregivers?      


You may notice that there are many states now considering policy actions that effect family caregivers. This is a markedly different environment that reflects the increased desire for remaining in one's community, coupled with changed incentives within the Affordable Care Act (ACA), that move towards outcomes that increasingly depend on supportive care at home and capped by the demographic changes that will create the demand for long-term services and supports (LTSS), for decades to come. At FCA, we track legislation across the states for this newsletter and we are here to report that the list is growing, covering topics like caregiver involvement in hospital discharge planning, tax credits for caregivers, paid sick leave and state planning efforts for family caregivers.

Media coverage is growing and we will share some of the stories that set the agenda, provide background and are especially compelling to view. One of the first notable pieces covering this is the PBS NewsHour segment aired April 8, 2014, highlighting the issue of hospital discharges, and the need to educate family caregivers about medication or prescription conflicts (carrying potentially serious side effects), administering medications at home, and training them on the increasingly technical and complicated care tasks they're left to carry out at home for their loved ones. 


In the weeks to come, we hope to cover efforts across the states that concern family caregivers to give the big picture view on advocacy trends across the United States. If you are working on legislation in your state or even your local community, let us know. We all need to see the bigger picture on advocacy across the country!  



Kathleen Kelly, Executive Director

Family Caregiver Alliance, National Center on Caregiving

(San Francisco, CA)



State Legislation, Policy & Reports
Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare at the state level.

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Federal Legislation, Policy & Reports 

Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare across the United States.

1. Supplemental Security Income Restoration Act of 2014 Senate Bill 2089, introduced in March by Sen. Brown (D-OH) and Sen Warren (D-MA), is an attempt to fix key elements of the SSI program . . .
2. Medicare Class Action Settlement Wins, Therapy Based on Need, not Potential For Improvement

Reports[FCA special note]: There are many great reports that have been recently issued, but two stand out; Hidden Heroes: America's Military Caregivers (The Rand Corporation), and the article series on family caregivers in the Journal of the American Medical Association.

RAND: Military Caregivers Study Series Releases: Hidden Heroes: America's Military Caregivers
4. JAMA: Caregiver Support
5. JAMA Editorial: Strategies to Ease the Burden of Family Caregivers
6. Rand Corp: US Senate Testimony on the Monetary Cost of Dementia in the US
7. Geographic Variation in Medicare Spending per Beneficiary Varies Significantly From One Part of the Country to Another
8.SCAN Foundation Report on Early Efforts on Integrating Behavioral & Physical Health in AZ, CA, MA & WA
International News

Articles on pending/proposed caregiving legislation, or current policies and reports on caregiving, healthcare around the world.   
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Research Reports & Journal Articles

Organizational reports and professional journal articles of interest surrounding caregiving and healthcare nationally and world-wide.

Conferences & Trainings

Upcoming trainings, educational conferences and speaker series on caregiving and related healthcare topics

1.THE CREATIVE AGE: Exploring Potential in the Second Half of Life . . . A National Leadership Exchange and Conference on Creative Aging

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Funding, Media & Miscellaneous 

Information and links related to funding and media and more...

STATE . . .

MD- HB935 Creation of Family Caregiver Task Force  
HB 935 would create a task force that will:  identify policies, resources, and programs available for family caregivers and find additional innovative and creative means to support family caregivers. By January 31, 2015 the Task Force must submit recommendations to the Governor for legislative and administrative action.


NM - Family Caregiver Task Force Established, Signed by Governor 

HJM 4, a joint memorial tasking the New Mexico Aging and Long-Term Care Services Department with formation of a family caregiver task force to create a state plan was signed by the Governor in March.  The memorial acknowledges the rapid increase of persons over the age of 85 and preference to age at home.  The task force will consist of family caregivers, recipients of care, healthcare professionals and other appointees. The report of the Task Force is due November 2015.


WA - State Alzheimer's Plan Passes Legislature, On to Governor for Signing   
SB- 1621 The Washington Department of health must convene an Alzheimer's disease working group that consists of the following members: an unpaid family caregivers of persons with Alzheimer's, professional Alzheimer's caregivers, people with Alzheimer's, representatives of nursing homes and assisted living facilities, psychologists and other researchers, and various other representatives appointed by the health department.  The workgroup is tasked with finding trends in the state's Alzheimer's population and service needs in a wide variety of areas, and report its findings in a report to the governor and legislature by January 1, 2016.


CA: HB 1522 Paid Medical Leave     

Assemblywoman Gonzalez (D-San Diego) recently introduced legislation providing workers with three paid sick days a year, noting that 6 million workers in California earn no sick leave benefits. Although various cities such as San Francisco, New York and Washington D.C. have ordinances providing paid medical leave, Connecticut is the only state to have such a law. Sick days could also be used to care for an ill family member. The bill faces opposition from business groups.  

CA- Analysis of How Medicaid LTSS Varies by County
This report by the California Medi-Cal Research Institute analyzes the differences in size, demographics, health status, social support, use patterns, expenditures, and outcomes of California's Long Term Support Services population on a statewide basis. Significant variation is evidenced across the state, with urban counties offering more HCBS services than rural counties, some counties have markedly higher levels of beneficiaries with cognitive impairments, LTSS are more fragmented in certain areas, differences in provider supply and other areas are detailed in the report.

state6FL- HB 569/SB 670 Restricts Law Suits Against Nursing Homes 

The Florida House civil justice committee approved a bill that would restrict law suits against nursing homes. The Senate version of the bill, SB 670, has been approved in its first committee hearing. Bill author Matt Gaetz (R-Walton Beach) claims the bill shields certain nursing home investors from lawsuits arising from patient deaths or injuries, and places new requirements on nursing homes regarding the release of medical records to patients or their representatives.  

CA: SB 911 Increases hours for Residential Care Licensing and Penalties for Misdemeanors against Patients

California Residential Care Facilities for the Elderly Act provides for the licensure and regulation of residential care facilities for the elderly by the State Department of Social Services. A person who violates the act is guilty of a misdemeanor and subject to civil penalty and suspension or revocation of license. This law increases the required 40 hour certification to a 100 hour certification program and requires DSS to annually review and update the certification exam. RCFs with residents that have specific health conditions would be required to employ a RN to oversee residential care.  Initial staff training hours will increase to 40 hours within the first 4 weeks of employment, with 20 hours of annual training.  



Supplemental Security Income Restoration Act of 2014  
Senate Bill 2089, introduced in March by Sen. Brown (D-OH) and Sen Warren (D-MA), is an attempt to fix key elements of the SSI program while improving the life of millions of low-income older adults and disabled.  This update of SSI will increase the disregard for other monthly income such as retirement, from $20 to $110, the first such adjustment in over 40 years.  The bill also increases the amount of resources a SSI recipient can retain from $2,000 to $10,000 so they can respond to emergencies such as a home repair or the replacement of an old car. The bill eliminates the harsh provision that reduces the monthly benefit whenever someone receives food or housing for less than fair market value from another person, including family members. SSI provides subsistence-level income to two million older adults with very limited financial resources who are either age 65 or over or cannot perform substantial work because of a severe disability. 
Medicare Class Action Settlement Wins Therapy Based on Need, not Potential For Improvement 
A class action law suit brought by individual Medicare beneficiaries and national organizations (Jimmo vs. Sebelius) reached a settlement in 2013, which requires that as of January 1, 2014 Medicare determination for SNF, Home Health and Outpatient Therapy will be determined solely by an individual's need for therapy- not on their potential for improvement.  Beneficiaries were not notified of the change in determination, but CMS is required to conduct and Education Campaign to ensure beneficiaries receive services that will slow or prevent deterioration in status. The Center for Medicare Advocacy, a legal representative in the suit, provides forms on its website if beneficiaries meet the criteria, but are told they are not eligible or must pay out of pocket. The settlement will benefit both SNF and HCBS beneficiaries.
RAND: Military Caregivers Study Series Releases: Hidden Heroes: America's Military Caregivers 
The largest study of caregivers of military veterans was released earlier this month entitled, Hidden Heroes: America's Military Caregivers. The study details issues familiar and distinct to the 5.5 million caregivers, of which 1.1 million are caring for post 9/11 veterans. While caregivers of older veterans resemble the national profiles of family caregivers, those post-9/11 caregivers are younger and dealing with cognitive impairments from concussions and TBI as well as PTSD and other mental health issues. The study also looks at the programs within and outside of the Veterans Health System to examine caregiver support services across the country. The study was funded by the Elizabeth Dole Foundation and is part of the Military Caregiver Study Series. For more information, go to:

fed4JAMA: Caregiver Support
FCA special note: this issue of JAMA has several articles related to family caregivers with a guest editorial by Dr. Joanne Lynn, Altarum Institute

Up to 90% of persons requiring long-term care at home are cared for by a family caregiver. Being a full-time caregiver can be both rewarding and difficult, and is often a 24 hour job that includes tasks such as medication management, help with ADLs and transporting to medical and other appointments. Many caregivers receive little formal training or family support. This leads to negative psychological, social and physical effects on the caregiver- commonly referred to as caregiver burden or stress.  This article raises public awareness of these issues and provides assessment questions and resources such as AARP and Family Caregiver Alliance to assist in supporting burdened caregivers.
JAMA Editorial: Strategies to Ease the Burden of Family Caregivers
Dr. Joanne Lynn, Altarum Institute wrote a stirring editorial in the JAMA issue featuring family caregiver articles. Dr. Lynn points to steps to improvement within the health care system that include: clinicians performing more broad spectrum caregiver assessments with caregiver involvement in the development of care plans for the care recipient with training and support for tasks, risk and assessment of home and caregiving situation.  
Rand Corp:  US Senate Testimony on the Monetary Cost of Dementia in the US   
Rand Corp:  US Senate Testimony on the Monetary Cost of Dementia in the US
This Rand Corp study used the ADAMS and 2010 U.S. Census data to determine the total cost of dementia to the U.S. economy now and in the future. Multiplying the per-person costs for dementia by the estimated number of persons with dementia who were 71 years of age or older in 2010 indicates an annual population cost of $109 billion for care purchased in the market, including the estimated value of informal home care boosts this cost to a range of $159 to $215 billion. The study was unable to distinguish costs for dementia and Alzheimer's due to the way the data was coded. Persons with dementia had $33,329 more in annual health costs for paid medical services such as doctors' visits, hospital stays and nursing homes. The costs are estimated to be $56,290 per person if unpaid caregivers received monetary compensation. Probability of dementia increases among nonwhite, female, single, less-educated, and lower income persons.  


Geographic Variation in Medicare spending per beneficiary varies significantly from one part of the country to another    
Geographic variation in Medicare spending per beneficiary is well documented, but the causes of that variation and what can be done to reduce spending in less clear. This study examines  Medicare spending and policy in differing areas of the United States. Medicare is the largest single payer in the United States, providing health insurance for 52 million elderly and disabled beneficiaries. Three out of four Medicare beneficiaries are in traditional fee-for-service (FFS) Medicare, which covers a wide range of acute and post-acute care services that are essentially the same across the country. Despite consistent benefits, the amount that Medicare spends per beneficiary in its traditional program is not constant nationwide. Raw spending numbers from CMS are used as a data source. The national average amount spent per beneficiary was $9.503; with a high in Miami, FL ($15,957), and a low in Grand Junction, CO ($6,569). Reasons for the cost variance are examined.


SCAN Foundation Report on Early Efforts on Integrating Behavioral & Physical Health in AZ, CA, MA & WA

Behavioral health disorders are among the most prevalent and disabling chronic conditions requiring closely coordinated services, but misalignments between Medicare and Medicaid often result in fragmented, poor quality care for dual eligibles. This study details early efforts in four states-Arizona, California, Massachusetts, and Washington-to improve integration of behavioral health services for Medicare-Medicaid beneficiaries. It details: (1) how states are using existing Medicaid behavioral health system capacity to advance care coordination and establish better integration with Medicare; and (2) common elements of physical and behavioral health integration strategies to guide other states in developing similar programs.



New Book of Note: 
Living in the Land of Limbo, Fiction and Poetry About Family Caregiving, Compiled by Carol Levine (Vanderbuilt University Press) 
Spoiler Alert: for those who have been caregivers, this book will have at least one - if not many - selections that give words and meaning to your own care experiences. We at FCA have to admit to a bias here: we know Carol Levine and appreciate her honest writing and speaking on the subject of caregiving. So it will come as no surprise that the compilation of fiction and poetry covers many of the unmentionable topics that families face every day. Recommended for anyone is a caregiver, has been a caregiver or works with caregivers - the insights are familiar and valuable to all. 
A review of the book can be found at: 




British study: Palliative Care Increases Rate of Home Death with Fever Symptoms 
Although most people prefer to receive care and die at home, less than 35% of deaths occur at home in most developed countries. This analysis was conducted of studies of the benefits and cost effectiveness of home palliative care services in high income countries. Of all the studies, 6 were determined to be high-quality random control trials. Patients receiving home palliative care were twice as likely to die at home, experience fewer symptoms, but caregiver grief was unchanged. Evidence was inconclusive for other outcomes including pain and quality of life.

Six studies examined cost-effectiveness, but results were inconclusive. Two of the six studies found palliative care to be cost effective, but the other 4 were inconclusive.  Further studies are needed to determine cost effectiveness. Compared with usual care, home palliative care is associated with increased odds of dying at home and fewer symptoms for patients with advanced illness. It is not associated with changes in caregiver grief. Cost-effectiveness is inconclusive.
Helping Clinicians Care for Caregivers  
With an estimated 43.5 million persons providing home caregiving to patients with chronic illnesses who are unable to care for themselves, caregiver burden is a growing concern that is often overlooked by health care providers. A meta-analysis of cohort studies of the relationship between social risk factors and adverse outcomes was conducted. Identified risk factors include female gender, low level of education, living with the care recipient, large percentage of time spent caregiving, social isolation, financial stress, lack of choice of the caregiver role, and depression. Successful strategies to mitigate caregiver burden include: support groups/psychoeducational interventions for caregivers of dementia patients, as well as use of anticholinergic or antipsychotic medications for dementia or dementia-related behaviors in the care recipient.
Health care professionals have a responsibility to recognize caregiver burden, and should personalized their assessment and intervention of caregivers.
Rush University: Alzheimer's Third Leading Cause of Death in the US Epidemiologists at Rush Medical Center in Chicago state Alzheimer's disease may cause up to six times more deaths than previously reported, making it the third leading cause of death in the country, just behind heart disease and cancer. An analysis of two large studies of more than 2,500 people age 65 and older who did not have dementia at the start of the study, found that 1,000 people had died after 8 years with a third of those deaths attributed to Alzheimer's.  Researchers claim that Alzheimer's has been underreported as a cause of death because pathologists erroneously list the symptoms secondary to the disease such as heart failure, pneumonia and malnutrition as the cause. Study findings, published in the Journal Neurology, states there are approximately half a million deaths a year caused by Alzheimer's.
JAMA: Study of Antidepressants and AD    

Researchers from 8 universities in the U.S. and Canada conducted a randomized, double-blind, placebo controlled study of 186 patients with probable Alzheimer's and marked agitation from August 2009 through January 2013. The objective of the study was to evaluate the efficacy of citalopram for agitation in patients with Alzheimer's, as well as determining the effects of the drug on function, caregiver distress, cognitive safety, tolerability and safety.  Findings included: significantly reduced caregiver distress and patient agitation, but potential adverse cardiac and cognitive effects for the person with Alzheimer's.  


THE CREATIVE AGE: Exploring Potential in the Second Half of Life 
A National Leadership Exchange and Conference on Creative Aging 

June 10 through 14, 2014
Washington, DC
The Creative Age National Leadership Exchange and Conference will convene leaders from around the globe across the sectors of aging, arts, health, and social services who are dedicated to promoting and sustaining creative expression as vital to healthy aging. This conference intends to build capacity, retool practitioners, as well as showcase creative aging programs in greater metropolitan Washington, DC. For more information visit our conference website:
The FDA and the Alzheimer's Association Launch the Alzheimer's Disease Regulatory Science Fellowships  The FDA and the Alzheimer's Association announce a new fellowship to allow an experienced physician, dedicated to treating and studying Alzheimer's disease, the opportunity to work collaboratively with the U.S. FDA. The fellow will work within FDA's Division of Neurology Products (DNP) to identify opportunities for collaboration with patient groups, academic researchers, and pharmaceutical manufacturers to advance the development of treatments for Alzheimer's and other dementias. This is a 2 year fellowship at the FDA Headquarters in Silver Springs, Maryland.  Applications are on a rolling basis, with anticipated start date as early as July, or as last as November 2014.
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