Family Caregiver Alliance
Volume XIII, Number 8, October 8th, 2013
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.

Federal legis icon
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.

International News

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

JAPAN: Changes in Perceived Filial Obligation Norms Among Coresident Family Caregivers in Japan
A Japanese study explores behavioral norms related to elder care in Japan, both before and after implementation of the country's nationwide long-term care insurance system in 2000.   
map of world globe
research report graphic
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. 6th Clinical Trials on Alzheimer's Disease (CTAD)
2. AARP Solutions Forum: Modernizing Medicaid - Putting Home and Community-Based Services on Equal Footing with Nursing Homes

conference graphic
funding media graphic
Funding, Media & Miscellaneous 

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

STATE . . .

CA: Governor Signs Home Care Services Consumer Protection Act to Governor  

Beginning January 1, 2015 home care organizations will be required to meet established registration standards, and be regulated by the State Department of Social Services (DSS). Home care aides must be registered by DSS, and submit to a background check, as well as sign a declaration under penalty of perjury regarding their criminal conviction history. Home care aides must prove they do not have tuberculosis, and will be listed in an online registry. The bill contains 3 pages of aides and organizations that are exempt from the Act.   


CA: Governor Signs Bill for Worker's Disability Insurance when Caring for Sibling, Grandparent, Grandchild and Parent-In-Law 
 Currently, employees in California can receive temporary disability insurance benefits to cover up to 55% of wages lost while they take up to six weeks of leave per year to care for a seriously ill spouse, domestic partner, child or parent. Under SB 770 extended family members can qualify for disability insurance, more accurately reflecting the broad spectrum of family caregivers in the state.


MI: Bill to Declare September Alzheimer's Month Introduced
HR 128. Declares September 2013 as Alzheimer's Month in Michigan. The resolution has passed the Michigan House and is waiting to be heard by the Senate


NY: Criminal Neglect or Abandonment of the Vulnerable Elderly or the Disabled Now a Misdemeanor  
NY 8149, recently introduced, makes neglect or abandonment of frail persons over 60, or a physically or mentally disabled person unable to care themselves, a misdemeanor.
NY: Legislation Placing Vote for $1 Billion Bond for Alzheimer's Research

NY introduced AB 8140, an act authorizing the creation of a state debt in the amount of one billion dollars, in relation to enacting the Alzheimer's Research Bond Act of 2014 and providing for the submission to the people of a proposition or question therefor to be voted upon at the general election to be held in November, 2014.
IL: Missing Person's Alert for Mentally Disabled People

HB 3673, recently introduced in the General Assembly of Illinois, amends the Department of State Police Law of the Civil Administrative Code, and will require
State Police to develop a coordinated program for a statewide emergency alert system when a developmentally disabled adult is missing or kidnapped. This includes the use of electronic message signs on roads and highways in the vicinity of a developmentally disabled adult abduction to immediately provide critical information to the public. The bill also provides that the Department of State Police shall establish a Developmentally Disabled Adult Plan Task Force to monitor and review the implementation and operation of the system. In addition, the Illinois Emergency Management Agency shall develop and implement a community outreach program to promote awareness of abduction prevention and response of developmentally disabled adults among the State's guardians of that population. A Developmentally Disabled Adult Safety Coordinator position will be created to assist in the establishment of state standards for the safety of developmentally disabled adults relating to kidnapping and abduction, and to advocate for the achievement of those standards. Effective immediately.


COMMISSION ON LONG TERM CARE: Congressional Report Published
The Commission on Long Term Care released its report to Congress, with recommendations on how to integrate and fund the American system of long-term care. The report addressed four main areas: Service Delivery, Workforce, Finance, and formation of a National Advisory Committee on Long Term Services and Supports (LTSS). Family caregivers are recognized as being the backbone of the LTC system, providing a majority of care in the U.S. The workforce section of the report states a vision of an LTSS system that supports family caregivers while attracting and retaining a competent workforce that will provide high quality person- and family-centered care in all settings. Recommendations for improvement include: involving the family caregiver and considering their needs in the assessment and care planning; ensuring family caregivers access to relevant information through technology to facilitate care, communication and decision making; inclusion of family caregivers as part of the care team and in the patients' records; and providing opportunities for caregiver interventions, including respite and integration with volunteer services.
COMMISSION ON LONG TERM CARE:  Minority Alternative Report Issued
While 5 of the 15 members of the Commission agreed with the spirit of the report, they had concerns about the funding of LTSS.  Rather than approve the Commission report, they issued a 17 page Alternative Report with their concerns.  
AARP: LTC Commission Gives Family Caregivers Much Deserved Support and Respect

The report just issued by the federal Commission on LTC has taken an important step putting family caregiving in the spotlight as an issue that can no longer be ignored. While the Commission could not agree on comprehensive financing of LTC services, they did address the information and support needs of family caregivers who are often isolated and unpaid, yet provide a majority of the long-term care. Estimates suggest it would cost $450 billion to cover the cost of care that family caregivers currently provide, unpaid. The report contains many recommendations, but the set of steps endorsed by the Commission to strengthen family caregiving was cited by Chairman Bruce Chernof as "one of the most fundamental and transformative recommendations in the report."
Commonwealth Fund: Health System Performance for Low Income Persons Ranked by State
Using 200% of FPL ($22,980 for a single person) as the definition of low income, this study analyzed 30 indicators of good health outcomes in each state, such as; access, prevention, quality, avoidable hospitalizations, and health outcomes. Almost a fourfold difference was found between states with best practices and those with poor practices. If all states could implement the practices of the states with best outcomes, an estimated 86,000 fewer people would die prematurely, and approximately 6.8 million life years could be gained. States with the best outcomes include Hawaii, Wisconsin, Vermont, Minnesota and Massachusetts. States with the worst outcomes include Mississippi, Oklahoma, Louisiana, and Arkansas. fed5
Conversation Project:: New Survey Reveals a "Conversation Disconnect"
The Conversation Project (TCP) recent published a study that finds while 9 in 10 Americans think it's important to talk about their own and their loved ones' wishes for end-of-life care, less than 3 in 10 have actually "had the conversation." The Conversation Project founder Ellen Goodman says, "Americans now overwhelmingly agree that it's important to talk with our loved ones about how we want to live at the end of our days. Yet, we still find it hard to begin those conversations. We need to close the gap so that people will die in the way they would choose." IHI supports the work of TCP, and recently launched the Conversation Ready Health Care Community, and will offer a free informational call on October 8. Clear communication regarding end of life choices are important so that health care organizations are aware of patients' wishes for end-of-life care, and can take actions that support those wishes.
U.S Department of Labor: Ruling Requires Minimum Wage and Overtime for Home Health Workers
Beginning January 1, 2015, workers who provide essential home-care assistance to elderly people and people with illnesses, injuries or disabilities will be guaranteed minimum wage and overtime pay as part of the Fair Labor Standards Act. Nearly two million direct care workers such as home health aides, personal aides and certified nursing assistants, will receive the same basic protections already provided to most U.S. workers. Roughly 50% of direct care workers are minorities, and almost 90% are female. There are numerous exemptions contained in the law. Disability advocates and some public officials have expressed concern that implementing the law may increase the cost of care, and lead to a reduction in the hours of care provided through programs such as IHSS and Medicaid.
U.S. FDA Issues Final Rules on Mobile Medical Apps

The U.S. Food and Drug Administration recently issued final rules governing the development of mobile medical applications (or "apps"). The FDA will focus its oversight on those products that have the potential to harm consumers if they do not function properly, and will regulate only those apps that transform smartphones into devices that the agency currently regulates (such as ECG machines which can help diagnose heart attacks). The agency will also regulate apps that would be used as an accessory to a regulated device, such as one that displays images used by physicians to diagnose patients. The FDA will not regulate personal wellness apps such as pedometers or heart-rate monitors. The projected market for mobile health apps will reach $26 billion by 2017. Currently, there are about 97,000 mobile health applications in major app stores.
NYT: $33 Million Grant Awarded For Alzheimer's Prevention Research

The federal government announced its largest grant so far to test an Alzheimer's drug on healthy people at greatest risk for the most common form of the disease. The $33.2 million grant, part of the government's national Alzheimer's plan, will help finance a clinical trial to test a treatment on people 60 to 75 who have no symptoms of the disease, but do have two copies of a gene known to greatly increase a person's risk of getting it as he or she ages. The research will be led by Dr. Eric M. Reiman and Dr. Pierre N. Tariot of the Banner Alzheimer's Institute in Phoenix. The study will test a drug or placebo on 650 adults in several locations, mostly in the United States. All of the participants will have two copies of the gene, ApoE4, having inherited it from both parents. The study is expected to begin in 2015, and is expected to cost more than $100 million.


JAPAN: Changes in Perceived Filial Obligation Norms Among Coresident Family Caregivers in Japan

A study done in Japan, and published online by The Gerontologist in September 2013, investigates the perceived filial obligation norms among co-resident primary family caregivers before and after Japan introduced its long-term care insurance (LTCI) system throughout the country back in 2000.  


The study focuses on behavioral norms related to elder care, and builds on previous studies that indicate perceived filial obligation norms changing with personal circumstances. Two major research questions were central to the study: How perceived filial obligation norms changed among co-resident primary caregivers before and after LTCI (in particular, whether and how changes in filial obligation differed across its sub-dimensions); and how primary caregivers' kin relationships are associated with perceived filial obligation norms. Of particular interest to the study's authors are daughters-in-law, who have long been considered default caregivers of aging parents in the Japanese society.  


The study notes that "surprisingly little information is available on how perceived filial obligation norms change before and after nationwide LTC policy reforms that are occurring throughout the world," labeling it 'unfortunate' in light of the unresolved question of whether expanding public LTC could erode or complement existing family informal care systems.



JAMA: Patient Outcomes Improved by Pay-for-Performance  

A new study in the Journal of the American Medical Association found pay incentives for clinician performance can improve cardiovascular care in small primary care clinics in New York City  that use electronic health records. Researchers from the University of California, San Francisco and the New York City Health Department used 4 key quality goals; aspirin or antithrombotic medication prescription, blood pressure control, cholesterol control, and smoking cessation interventions in 84 small primary care clinics in New York City. The clinics were grouped by size and location and randomized into Incentive (pay for performance, P4P) or fee-for-service (usual care).The P4P group contained 4,500 patients and the control (fee-for-service) contained 3,000. The P4P clinic physicians were paid a financial incentive when a patient met a quality goal, and their clients experienced significantly better outcomes in all 4 key quality goals. The study lasted from April 2009 through March 2010. Since the goal of the P4P policy is to improve long-term outcomes, further study is needed to determine if P4P will produce long term improved outcomes.   

RAND CORP: Major Changes to Medicare Reduce Cost, but Cut Enrollment and Increase Spending for Seniors 
As the budget battle looms in the U.S. Congress, various changes are proposed to cut Medicare costs. This Rand research study looks at the effects of the following changes: a) charging a premium for Medicare Part A (saves the U.S. Treasury $400 billion between 2012-2036 but cuts enrollment by 1.1 million seniors); b) raising the eligibility age from 65 to 67 ($1.2 trillion saved by 2036, but enrollment reduced by 7.6 million), and c) Making all Medicare a premium support program (saves the U.S. $900 billion by 2036, reduces enrollment by 2.3 million, and increases costs to beneficiaries). The challenge to policymakers is in the tradeoff: reducing costs at the price of reducing enrollment, and leads to the question of whether to provide generous benefits to a few or smaller benefits to many . . .
KFF: Report Looks At Income Disparities for Seniors On Medicare
Members of both the Democratic and Republican parties have advanced proposals to overhaul Medicare as part of any legislation to limit federal spending on entitlements and reduce the deficit. Paul Ryan, 2012 GOP Vice Presidential Candidate and current House Budget Committee Chairman, has proposed cuts in government support for Medicare, and President Obama's fiscal 2014 budget plan requires Medicare beneficiaries pay more for home health and outpatient services. This KFF study, finds that future Medicare recipients will not be better off than current recipients, a fact that is especially true for blacks and Hispanics. Additional adverse factors for future recipients include the increase in Social Security's full retirement age from 65 to 67, the continued shift among employers from defined-benefit pensions to defined-contribution pensions, and a decline in the number of employers offering retiree health benefits.

6th Clinical Trials on Alzheimer's Disease (CTAD)
November 14-16, 2013

San Diego, CA, U.S.A.  


The 6th annual CTAD conference will relate experiences from international teams covering every stage of clinical trials in Alzheimer's Disease. CTAD 2013 provides an opportunity to learn about the latest results in drug trials as well as important topics such as internet screening of cognition to recruit for clinical trials, designing drug trials taking into account neuropsychiatric symptoms of AD, Down syndrome and AD as well as ethical issues and methodological considerations.  

AARP Solutions Forum -  Modernizing Medicaid: Putting Home and Community-Based Services on Equal Footing with Nursing Homes
Wednesday, October 30, 2013 
9:30 AM - 11:30 AM
Senate Russell Office Building, Room 325, Washington, DC
Continental breakfast available at 9:00 AM

Join us to explore modernizing Medicaid to enable people who need long-term services and supports (LTSS) to live where they choose, including their own homes and communities. This discussion comes at a time of growing bipartisan support for changing Medicaid's requirement to fund LTSS in nursing homes while funding home and community-based services (HCBS) on a limited and optional basis. In addition to restricting choice, the half-century old provision makes it difficult to meet a growing demand for LTSS in a cost-effective way. 
Shield HealthCare offers $500 for Best Caregiver Story in its 13th Annual Story Contest  

This year's topic is "What Makes Caregiving Rewarding?" The story contest honors the challenging role of family caregivers and health care professionals. It also provides an encouraging forum to share expressions of love and appreciation for their dedicated role. In celebration of National Family Caregiver's Month, the contest runs from September 3, 2013 through November 30, 2013. The top three story will receive a $500 American Express Gift Card and a 1-year subscription to Today's Caregiver Magazine. The five runners-up will also be awarded the magazine subscription and a $150 American Express Gift Card. All contest entries must be one page, emailed to, submitted via online entry form or mailed and postmarked by November 30, 2013. Last year's grand prize winners included two mothers of special needs children and a daughter caring for her elderly mother with Alzheimer's.   


Alzheimer's Foundation of America (AFA) National Memory Screening Day

The Alzheimer's Foundation of America (AFA) is offering free, confidential memory screenings at community sites throughout the nation. These screenings will be administered by qualified healthcare professionals as a part of an annual initiative called National Memory Screening Day. Click on the link and enter your zip code to find a screening in your area!     


Join Our Mailing List Donate
  Please help support FCA's caregiver advocacy efforts
with a donation today. Thank you!