Family Caregiver Alliance
Volume IV, Number 1, February 5th, 2014

Dear Readers:       

The New Year starts off with many good omens: increased advocacy at the state level for family caregivers, CMS final rule changes that call for assessment of the family caregiver's needs when a plan of care rests on their supportive efforts, and for most states, some better revenue projections for more balanced budgets. Here's to progress in 2014 on behalf of caregiving families everywhere!

Kathleen Kelly, Executive Director
Family Caregiver Alliance, National Center on Caregiving

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.

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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, summits and speaker series on caregiving and related healthcare topics

1. 2013 Rosalinde Gilbert Innovations in Alzheimer's Disease Awards Reception
Aging in America: 2014 Annual Conference of the American Society on Aging
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STATE . . .

WA:  SB 6421  Long-term Care Worker Certification, Training and Continuing Education Requirements  
Requires unlicensed long-term care workers to be trained and certified by the state. The bill exempts parents and respite workers who work less than 300 Hours a year from certification and training requirements. The bill requires certified LTC workers to receive 12 hours of annual continuing education.  


AARP State Advocacy Agenda Targets Family Caregivers 

Across the states, AARP is targeting family caregivers for advocacy efforts in the next few years. Increased funding for respite services, flexible workplace policies, caregiver assessment, reduction of financial burden and delegation of nursing tasks to home care workers are some of the key topics for state efforts. A model bill, the Caregiver Advise, Record and Enable (CARE) Act, has already been introduced in 11 states with others considering administrative changes to incorporate key points of the bill. Advocates and family caregivers interested in what is happening in their state should contact the state offices of AARP for further details.  For a more detailed description of the CARE Act, please see the write up on Hawaii (HI 2055) below.


HI: HB 2055 Introduced: Patients Can Designate Home Caregiver; Hospital to Train Caregiver and Include in Treatment Plan

This bill enables caregivers to provide competent post-hospital care to their family and other loved ones, at minimal cost to taxpayers. It will allow patients to designate a home caregiver (noted in patient's medical record), require the hospital meet with designated plan of care before transfer or discharge & instruct caregiver in care tasks before discharge. Patient's designation of a caregiver, the relationship of the caregiver to the patient, and the name, telephone number, and address of the patient's caregiver will be placed in the patient's medical record.  The caregiver will receive a discharge plan, description of after-care tasks and information for community resources.     


CA: Assembly Hearings on Backlog of Caregiver Abuse Complaints
The California Assembly Committee on Health and Committee on Aging and Long Term Care held an oversight hearing on January 21 to hear complaints that regulators have not processed complaints against nursing assistants.  Articles by the Center for Investigative Reporting found that since 2009 the California Department of Public Health has closed or dismissed an overwhelming majority of complaints against nursing assistants and home health aides without taking action.  State officials testified that the state regulatory agency has a backlog of about 700 investigations that are more than a year old, and uninvestigated. Advocates testified that the California agencies have claimed there are more than 10,000 incidents of caregiver abuse that have not been investigated.  The Center for Investigative Reporting claims the heavy backlog complicates investigations because over time witnesses die, staff departs, and evidence is lost or misplaced. Ron Chapman, director of California Department of Public Health, said Assembly Committees and CDPH officials have set a March deadline to release a report on the backlog of abuse investigations.


AZ: Family Caregiving and LTC Services are Legislative Priorities for Advocates

Arizona AARP vows to make as their top priorities in 2014, building a bipartisan coalition of state legislators to support LTC services, and a study of how to better support family caregivers.  AARP will focus on forming a group of state legislators to introduce an Arizona Caregiver Resolution that would establish a committee to work on policies, resources and programs that would assist family caregivers providing in-home care for older adults.   


CMS: Release of Key Provisions of Final Rule for 1915(i) HCBS State Plan Option
CMS issued notification of expanded requirements and services in response to public comments made regarding proposed 1915 (i) proposed rules issued in 2012. This final rule establishes a set of requirements for HCBS settings under Medicaid options 1915(i), 1915 (c), and 1915(k), and new person -centered planning requirements for beneficiaries under 1915 (c) and 1915(i). The provisions mark a shift at CMS towards the nature and quality of the patient experience, and emphasis on outcomes rather than location.
Of note is the final rule language regarding caregiver assessment: "Include in the assessment of the individual's physical, cognitive, and behavioral health care and support needs, strengths and preferences, available service and housing options, and if unpaid caregivers will be relied upon to implement any elements of the person-centered service plan, a caregiver assessment.   
New Report on Inclusion of Family Caregiver Assessment in Medicaid HCBS Waiver Programs Released

"Listening to Family Caregivers: The Need to Include Family Caregiver Assessment in Medicaid Home-and Community-Based Service Waiver Programs," a 50-state study conducted by the National Center on Caregiving, Family Caregiver Alliance and commissioned by the AARP Public Policy Institute, was released in December.  


The study is the first detailed analysis of family caregiver assessment tools and processes in use by the states in Medicaid HCBS 1915 (c) and 1115 Waiver programs.  Forty-six states and the District of Columbia responded to the study survey, a 92% response rate. 


Key findings include: 1. The concept of assessing a family caregiver's own needs is not well understood in many Medicaid HCBS programs. A minority of states view the assessment process as directed to the family caregiver, asking questions about their own health and well-being and identification of services and supports for the caregivers. 2. Only about 30 percent of states include any family caregiver assessment in their Medical HCBS waiver programs. Only 15 states met minimum defined criteria for family caregiver assessment.  3. Most states that do assess family caregiver needs use the information to develop a service plan for the care recipient and to help connect family members and friends to needed services and supports. 


The eight Policy Recommendations include a call for family caregiver assessment to be part of all assessment tools for Medicaid HCBS Waivers programs; for expansion of family caregiver assessment questions in the interRai HDS-HC, the most widely used assessment tool across state Medicaid Waiver programs, to increased funding for community-based supportive services under the National Family Caregiver Support Program to provide more in-depth services to families.   


The research was funded by the John A. Hartford Foundation and the US Administration for Community Living, Administration on Aging. 


U.S. Supreme Court Hears Illinois Argument Supporting Unionization of Home Health Aides  
The U.S. Supreme Court (Harris v. Quinn) heard opening arguments in an Illinois case that could deal a serious blow to public employee unions. Currently the state of Illinois has about 28,000 home care aides working in patients' homes. Before the state recognized the home health aide union there was a high rate of turnover and disabled adults had a difficult time finding caregivers.  Following unionization, workers receive training and supervision, their wages have almost doubled and they have health insurance.  Retention of aides has increased, and the state has saved $632 million.  Three of the 28,000 aides object to paying the non-union member reduced dues that cover only the cost of negotiating and administering the contract.  The three plaintiffs contend that the state is not their employer because individual patients can hire and fire their own aides. The state claims all aides are trained, supervised and paid directly by the state.  What makes this case remarkable is that the US Supreme Court has allowed public employee unions to require mandatory reduced fair-share fees for nonmembers for decades.  Reversal of the court position could negatively impact all unions. 


Large Numbers of Doctors Cut from Medicare Advantage Networks   

Medicare Advantage plans recently terminated thousands of primary care doctors and specialists, much to the concern of both patients and doctors.  Approximately 27% of Medicare recipients have Medicare Advantage. The most dramatic reductions may be occurring in United Healthcare's Medicare Advantage plan which plans on cutting 10-15% of their doctors by the end of 2014. With 3 million members, the plan is the largest of its kind in the nation. Doctors claim patient care is threatened as patients they have followed for decades must now find new doctors still covered by the plan, while insurers say the cuts were necessary to prepare for future cuts in managed Medicare.   


Asian-American Children Struggle to Obey a Cultural Code as Parents Age

While the U.S. population becomes older and more diverse, Asian-Americans struggle to adapt to changing cultural beliefs related to aging. Nearly three-quarters of the 17.3 million Asians in the United States were born abroad, and they face the most complex cultural issues related to assimilation and aging. Filial piety, respect for one's elders based on Confucian philosophy, is a large part of Asian cultural expectations, yet both in the U.S. and Asia increased numbers of families are geographically dispersed or both spouses work. Culturally sensitive services for Asian-American seniors has been slow to develop, but new HCBS and assisted living services are being established from within the Asian community.
JAMA: Many Hospitalized Older people Need Help Making Decisions 
A new study says older people often rely on family members or other surrogates to make major medical decisions.  Researchers analyzed information on patients over the age of 65 who were admitted to two hospitals in one Midwestern city from November 2008 through December 2011. Inclusion criteria included patients requiring more than 48 hours of hospitalization, with data collection from physician interviews and medical record review.  Of the 1,598 total study subjects, 1,083 faced at least one major medical decision that was discussed with the patient or a surrogate. Of those making a major medical decision, 570 patients made all their decisions alone (53%), surrogates made all the decisions for 249 of the patients (23%), and 264 made decision with the help of a surrogate (24%). Researchers stated that half the patients required decision making help within 2 days, and recommended that hospitals should work to accommodate surrogate decision makers. Surrogate decision makers were most often the patients' daughters, followed by sons and spouses.  Patients requiring surrogate assistance were most often faced with decisions about life-sustaining treatments, operations, and where patients would go following discharge from the hospital, and were more seriously ill and likely to be sent to a nursing home. The study was published in the JAMA.

NIH-funded Study Shows Effects of Cognitive Training Can Last for 10 years. 
New results from the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) show that effects of cognitive training can retain some degree of improvement for up to 10 years after the training program ends. The study consisted of 2,832 volunteers who were divided into three training groups; memory, reasoning and speed-of-processing, and a control group. The training groups participated in ten 60- to 70-minute sessions over five to six weeks. Effects for each specific cognitive ability were evaluated immediately following the sessions and at one, two, three, five and 10 years after the training. The average age of study participants was 82 years old. Results support public policies which provide cognitive training as an intervention that might help maintain the mental abilities of older people, enabling them remain independent and in the community. The study was published in the Journal of American Geriatrics.
Competition and the Impact of Online Hospital Report Cards     
Beginning in 1998 Medicare began posting online hospital report cards. Authors of this study tested the hypothesis that public information and competition combine to create higher quality healthcare that is cost effective.  A retrospective study of Pennsylvania hospital records from 1995 to 2004 were examined to determine if hospitals in more competitive markets increased the quality of care after Medicare began posting report cards rating the quality of their Coronary Bypass Graft programs.  Researchers found that following the implementation of hospital online report cards, hospitals in more competitive markets devoted more resources per patient, and their severely ill patients experienced lower mortality rates.


Preserving Dignity in Patient Caregiver Relationships by Using Robots to Express Emotions for Parkinson's Patients

The National Science Foundation funded researchers at Tufts and Georgia Tech University to study how to improve the long-term quality of care for patients in the early stages of Parkinson's disease. Parkinson's patients with facial masking are unable to express emotions, causing estrangement with caregivers and family members. This study examines the efforts of scientists in developing robots to assist in transmission of artificial expression of emotions with the goal of improving the patient-caregiver relationship.  


2013 Rosalinde Gilbert Innovations in Alzheimer's Disease Awards Reception

The 2013 Rosalinde Gilbert Innovations in Alzheimer's Disease Award winners will be honored at a reception at the American Society on Aging Annual Conference on March 13th and you're invited! Hosted by Family Caregiver Alliance, the reception will showcase the good works of the Alzheimer's Poetry Project, The Genius of Marian (documentary) and the Alzheimer Specific Services for the Everglades Agricultural Area. The reception will be held in the Coronado Room DE at the Manchester Grand Hyatt, San Diego from 6:30 to 8 pm. Join us for food, fun and celebration of the innovative projects and communities across the country!     

  • For more information call 800.445.8106 or email at     


Aging in America: 2014 Annual Conference of the American Society on Aging  

Aging in America: 2014 Annual Conference of the American Society on Aging is slated for March 11th - 15th in San Diego, CA. The ASA Conference is the largest multidisciplinary conference on aging in the nation. Over 600 sessions including interactive workshops, panels, poster sessions, and round tables will be offered.  

National Conference of Caregiving Coalitions
On March 12, 2014 the National Alliance for Caregiving will host its 8th Annual National Conference of Caregiving Coalitions in conjunction with the Aging in America: 2014 Annual Conference of the American Society on Aging. To register go to and select "8th Annual National Conference for Caregiving Coalitions" during registration.

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