Vol. 15, No. 5
October 30, 2015

A message from Executive Director Kathleen Kelly

Welcome to our latest newsletter, which contains information about the exciting recent developments in the area of caregiving.

In addition, in honor of November 2015 being recognized as National Family Caregivers Month, we are excited to announce the launch of a new social media campaign and a caregiving blog.

These initiatives, like the numerous projects we have executed during the last three decades, are tailored to both acknowledge and support family caregivers that selflessly labor in our communities.

This November we thank family caregivers, and we are committed to doing so throughout the years to come.

Kathleen Kelly
Kathleen Kelly
Executive Director
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103

Amend Title XI of the SSA to Clarify Waiver Authority Regarding Programs of All-Inclusive Care (S. 1362)
  • This bill authorizes the Department of Health and Human Services (HHS) to waive applicable general and Medicaid requirements of the Program of All-Inclusive Care for Elderly (PACE) in order to conduct demonstration projects through the Center for Medicare and Medicaid Innovations (CMMI) that involve PACE.
Ensuring Useful Research Expenditures is Key for Alzheimer's Act (S. 2067)
  • This bill establishes EUREKA Prize Competitions in order to accelerate discovery and development of disease-modifying, preventive, or curative treatments for Alzheimer's disease and related dementia.
Surface Transportation Reauthorization and Reform Act of 2015 (H.R. 3763)
  • This bill includes provisions highlighting the transportation needs of elderly and disabled individuals for future government contracts regarding technical assistance in public transportation systems and initiatives addressing advanced transportation and congestion management.
Veteran CARE Act (S. 2179)
  • This bill amends title 38, United States Code, to allow the Secretary of Veterans Affairs to enter into certain agreements with non-Department of Veterans Affairs health care providers if the Secretary is not feasibly able to provide health care in facilities of the Department or through contracts or sharing agreements, and for other purposes.
Department Awards $1.55M to Study Paid Family, Medical Leave Implementation
  • This U.S. Department of Labor News Release details how its Women's Bureau awarded $1.55 million in grants to various state and local agencies to research and analyze how paid leave programs can be developed and implemented across the country.
Medicaid's Role for People with Dementia
  • This Kaiser Family Foundation Medicaid Issue Brief describes Medicaid's role for people with dementia who live in the community, highlighting common eligibility pathways, beneficiary characteristics, covered services, health care spending and utilization, and key policy issues.
An Act to Amend Section 1262.5 of the Health and Safety Code, Relating to Health Facilities (S.B. 675)
  • This bill requires a hospital to take specified actions relating to family caregivers, including, among others, notifying the family caregiver of the patient's discharge or transfer to another facility and providing information and counseling regarding the posthospital care needs of the patient, if the patient has consented to the disclosure of this information.
Elder Abuse: Protective Orders (S.B. 196)
  • This bill would authorize a county adult protective services agency to file a petition for a protective order on behalf of an elder or dependent adult who has suffered abuse and has an impaired ability to appreciate and understand the circumstances that place him or her at risk of harm, or who has provided written authorization for the agency to act on his or her behalf.
In-Home Supportive Services: Authorized Representative (A.B. 1436)
  • This bill authorizes an applicant for, or recipient of, In-Home Supportive Services (IHSS) to designate an individual to act as his or her authorized representative for purposes of the IHSS program.
New Jersey
An Act Concerning Influenza Vaccines for Older Adults and Supplementing Title 52 of the Revised Statutes (A. 3890)
  • This bill requires continuing care retirement communities to provide residents with information on influenza vaccines for older adults.
Nursing Homes: Eliminate Michigan-Based Clinical Practice Guidelines OR An Act to Amend Public Health Protections (S.B. 64)
  • This bill includes a clause requiring nursing homes to provide each resident who uses a hospital-type bed the option of having bed rails.
Dementia Also Takes Toll on Unpaid Caregivers, Study Shows
  • This Kaiser Health News story summarizes a recent study examining the demands placed on family members and other unpaid caregivers of adults ages sixty-five and older who are living with dementia.
  • Among family and unpaid caregivers to older noninstitutionalized adults, one-third of caregivers, and 41 percent of the hours of help they provide, help people with dementia, who account for about 10 percent of older noninstitutionalized adults.
  • Caregiving is most intense to older adults with dementia in community settings and from caregivers who are spouses or daughters or who live with the care recipient.
The Burden of Health Care Costs for Patients With Dementia in the Last 5 Years of Life
  • This Annals of Internal Medicine study examines the social costs and financial risks faced by Medicare beneficiaries five years before death, and highlights the following conclusions:
    • Average total cost per decedent with dementia was significantly greater than that of those who died of heart disease, cancer, or other causes.
    • Although Medicare expenditures were similar across groups, average out-of-pocket spending for patients with dementia was 81% higher than that for patients without dementia (a similar pattern held for informal care).
    • Large and uninsured health care expenditures among persons with dementia placed a large financial burden on families, especially among demographic groups least prepared for financial risk such as those who were unmarried, black, or had less than a high school education.
A Nurse with Fatal Breast Cancer Says End-of-Life Discussions Saved Her Life
  • In this Washington Post Health & Science article, nurse Amy Berman presents a letter addressed to the Centers for Medicare & Medicaid Services (CMS) about the importance of end-of-life conversations in her experience as a survivor of fatal breast cancer. Her letter comes at a critical time, as the CMS will soon make a decision about paying doctors and other providers who talk to their patients about end-of-life planning.
It's a Shame: Low-Income Medicare Beneficiaries Continue to be Plagued with Balance Billing
  • This AARP Thinking Policy blog entry describes how, in spite of federal protections for qualified Medicare beneficiaries (QMBs) against the practice of balance billing, many QMBs are still receiving bills for Medicare deductibles, coinsurance, and copayments when they should not be. Even worse, many QMBs are, out of fear and frustration, paying these fees.
Roche's MS Drug Reports Promising Results
  • This Wall Street Journal Health article provides an overview of the results of three studies of an experimental drug, ocrelizumab, against late-state multiple sclerosis (MS). The drug proved effective in these studies, and may herald a new treatment option for those suffering from MS.
AARP is Doing a Deep Dive of Caregiver Tech Needs
  • MedCity News reports that AARP is working on a study focused on the needs of informal family caregivers who may be Millennials, members of Generation X, or older, to identify areas where there are opportunities to use technology to address those needs.
This Hot New Technology Can Save Medicare
  • This Fiscal Times profile summarizes the ways in which telehealth--where patients consult with doctors via Skype or some other Internet service--is an effective means of improving care and reducing costs under Medicare.
  • The following are highlighted as key benefits of telehealth:
    • Improves care through rapid response, especially for those older citizens who might be less mobile
    • Lowers health expenses by avoiding unnecessary doctor visits
    • Drives economic growth by redirecting resources
AARP Starts $40 Million Venture Fund for Technology for Seniors
  • This Bloomberg Business News report addresses a new AARP initiative to establish a $40 million venture capital fund to boost innovation and technology.
  • The fund, administered by a unit of JPMorgan Chase & Co., will invest in enabling aging at home, improving access to health care, and expanding the market for preventive health services.

Family Caregiver Alliance's Social Media Campaign
  • caregiver Family Caregiver Alliance (FCA) is launching a campaign to raise awareness across social media platforms, such as Facebook and Twitter, about the 40 million U.S. family caregivers who provide approximately $470 billion of unpaid service annually.
  • Throughout the month, FCA will post photographs of caregivers across the country holding a sign that reads, "I am a Caregiver for my ________," to recognize and publicize the invaluable service family caregivers provide.
  • To participate in the campaign, visit this page, where you can download your "I am a Caregiver for my ________" sign.
Family Caregiver Alliance's 30 Days of Caregiving Blog
  • _30dayscaregiving FCA is publishing daily blog posts during the month of November exploring four (4) week-long themes about ongoing changes in the caregiving landscape--changes in who provides care, what the needs of care recipients and caregivers are, where caregiving is taking place in an increasingly globalized society, and how caregiving takes place in light of new technological innovations and policy interventions.
  • Access the blog here.
Alzheimer's and Dementia Care Relief Grant Program
  • Hilarity for Charity and the Home Instead Senior Care network are collaborating to award home care grants to those providing care to their loved ones living with Alzheimer's disease or other dementias.
  • The grants will be awarded across the United States and Canada, and are meant to contribute to the provision of exceptional home care to families affected by this disease, and to give these families support and rest.
Resources for CBOs: The SCAN Foundation Linkage Lab Initiative
  • The SCAN Foundation, through its Linkage Lab Initiative, offers a suite of resources for CBOs seeking partnerships with the health care sector. Resources include the following:
    • Case studies from the first cohort of Linkage Lab grantees, which include information about their key objectives and strategies, successes, challenges, and lessons learned.
    • Free online learning modules for CBOs to build leadership and management capacity.
    • Perspectives from Dr. Bruce Chernof on the importance of forming effective health care/CBO partnerships.
The Community Research Center for Senior Health (CRC-SH) Releases a New Resource in the Arena of Evidence Based Programs (EBPs)
  • CRC-SH has developed a free web-based toolkit to guide CBOs through the selection, implementation, and evaluation of EBPs to better promote older adult health and well-being.
*All FCA/NCC Caregiving Policy Digest Research Registry listings are displayed in the manner they were received by FCA/NCC.