This month’s briefing on federal and state legislation, news, and more ...
Vol. 16, No. 7
August 4, 2016

Alzheimer’s Beneficiary and Caregiver Support Act (S. 3137)

  • This bill requires the Center for Medicare and Medicaid Innovation to test the efficacy of providing Alzheimer's disease caregiver support services in delaying and/or reducing the use of institutionalized care for Medicare beneficiaries with Alzheimer's disease or a related dementia.

Alzheimer’s Caregiver Support Act (S. 3113)

  • This bill amends the Public Health Service Act to authorize grants for training and support services for families and caregivers of people living with Alzheimer's disease or a related dementia.

Disability Integration Act of 2016 (H.R. 5689)

  • This bill prohibits discrimination against individuals with disabilities who need long-term services and supports.

Elder Abuse Prevention and Prosecution Act (S. 3270)

  • This bill aims to prevent elder abuse and improve the justice system's response to victims in elder abuse and exploitation cases.

Independence at Home Act of 2016 (S. 3130)

  • This bill amends title XVIII of the Social Security Act to provide for a permanent Independence at Home medical practice program under the Medicare program.

Senior Citizen Protection Act of 2016 (H.R. 5694)

  • This bill directs the Attorney General to establish guidelines for a model elder abuse registry, and to provide grants to States for establishing and operating such a registry.

Senior Home Modification Assistance Initiative Act (S. 3230)

  • This bill amends the Older Americans Act of 1965 to establish an initiative, carried out by the Assistant Secretary for Aging, to coordinate Federal efforts and programs for home modifications enabling older individuals to live independently and safely in a home environment.

Seniors Tax Hike Prevention Act of 2016 (S. 3111)

  • This bill amends the Internal Revenue Code of 1986 to extend the 7.5 percent threshold for the medical expense deduction for individuals age 65 or older.

United States-Israel Alzheimer’s Disease Cooperation Act (H.R. 5645)

  • This bill authorizes the Secretary of Health and Human Services to award grants for Alzheimer's disease research that encourage research collaborations between U.S. and Israeli academic and business organizations.

Consumer Voices Matter: Meaningful Engagement of Consumers and Caregivers in Long-Term Care

  • This article from AARP highlights a new rule issued by the Centers for Medicare & Medicaid Services (CMS) that requires states to include consumer and family caregiver perspectives in the design, implementation, and oversight of state-managed long-term services and supports (LTSS) programs. The new requirement is an opportunity for states to provide supports to consumers and their representatives, and thereby improve their LTSS programs.

Federal Budget: FY17 Aging Program Funding Table

  • This resource from the National Council on Aging presents information about Federal appropriations for aging programs for the fiscal year 2017, including details regarding administration requests for funds and funding trends over the past three fiscal years.

Caregiver Advise, Record and Enable (CARE) Act of 2015

  • Recently passed in Delaware (S.B. 52), this bill enables family caregivers to provide safe and effective home care to older adults. In particular, the bill, which varies by name across the States, supports family caregivers when their loved ones are admitted to the hospital, and helps them to learn how to safely provide care at home once their loved ones are discharged from a medical facility.

At-Risk Adult Fatality Review Act (H.B. 4826)

  • This bill amends the Adult Protective Services Act to include enhanced provisions about multidisciplinary and multi-agency reviews of deaths of at-risk adults to determine the cause of death and to develop and implement measures to prevent future deaths from similar causes among this vulnerable population.

Aging-Abuse Records Disclosure Act (H.B. 4552)

  • This bill amends the Adult Protective Services Act to include the State’s Attorney’s office among the agencies required to share information with law enforcement agencies regarding known or suspected abuse or neglect of vulnerable adults.

Kupuna Care Program Appropriations Act (H.B. 1878)

  • This bill appropriates over $5 million in the FY 2017 for the continuation of the kupuna care program, a home care program enabling seniors to lead independent, meaningful, and dignified lives in their own homes and communities.

Health-eBrain Study Offers Alzheimer’s Caregivers a ‘Mobile Mirror’ of their Own Cognitive Vitality

  • Now in Phase II of the study, as reported by MobiHealthNews, a recent investigation of the impact of caring for an individual with Alzheimer’s on the caregiver’s own brain and behavioral health revealed that these caregivers experienced cognitive impairment when compared to matched controls. The next phase of the study will use a mobile brain health assessment app to collect further data on this phenomenon—the app provides detailed feedback about cognitive function that can be analyzed for changes over time—as researchers evaluate the effectiveness of a virtual case-management intervention tool for reducing caregiver burden.

Integrating Estimates of the Social and Individual Costs of Caregiving into Dementia Treatment Trials

  • This Health Services Insights research study discusses how current dementia trials ignore to provide information on the social and individual costs of caring for those with dementia. The author stresses that it is important for these trials to recognize that dementia carries individual economic and noneconomic (i.e., emotional burden) costs for the person with dementia and their primary family caregiver. Until they do, any trial of a medication intended to mitigate, delay, or erase dementia and its effects will fail to adequately assess that medication’s effects.

New Study: Caring for Elderly Stroke Survivors Costs an Estimated $40 Billion Per Year

  • New research from the University of Michigan (and published in the research journal, Stroke) demonstrates that when stroke survivors need more than 20 hours of care per week, this need translates to about $11,000 per stroke survivor per week, for an annual estimate of around $40 billion in costs to care for these elderly stroke survivors. These estimates correct for the previously underestimated costs of caregiving, which will only increase as baby boomers age, suggesting the need to plan for other mechanisms to support caregivers and survivors.

A Case Of Zika Apparently Spread From A Patient To A Family Caregiver

  • According to this NPR story, a family caregiver in Utah appears to have contracted the Zika virus while caring for an elderly family member infected with a very high level of the virus. Health officials recognize that there is still a lot to be learned about the Zika virus such as whether it can be spread from person to person through non-sexual contact with a sick person. Until officially stated otherwise, there is still “no evidence of any risk of Zika virus transmission among the general public,” assures Utah’s deputy state epidemiologist, Dr. Angela Dunn.

Democratic and Republican Platforms Back Home-Based Care For Older Adults

  • This article from Forbes highlights that, for the first time, both major political parties have explicitly recognized in their respective platforms the need for community-based long-term care, marking a significant step towards future policy change around personal assistance and social supports for older adults. The Democratic platform addresses the importance of strong home-based services and supports for both paid aides and family caregivers. It also calls for expanded family leave, which could help some working people caring for aging parents or spouses. The Republican platform is less specific with respect to particular policies it plans to enact, though it explicitly regards home-based care and elder abuse prevention as policy priorities.

Nursing Home Bills Are Swamping Medicaid

  • This Money story reports that many Americans cannot afford long-term care (LTC) and are turning to Medicaid, the nation’s public health insurance program for low-income people. Although Medicaid was never intended to cover LTC for all, it now pays about 40 percent of the nation’s expense. As Baby Boomers age, federal Medicaid spending on LTC is widely expected to rise significantly–by nearly 50% by 2026. The pressure is expected to only intensify as people age, so both state and federal officials are scrambling to control spending. 

A New Range of Clothing for People With Disabilities

  • This Wall Street Journal story details how adaptive apparel, clothes that address the difficulty of getting dressed, is being promoted by the fashion industry. For example, Molly Dye offers CareZips, trousers that offer more coverage and accessibility for caregiving. These slacks have zippers strategically placed at the sides and crotch so that a resting body goes without pressing on them and creating bedsores.

Elder Care On-Demand: Why Tech is Setting its Sights on Your Parent

  • This story from The Guardian describes how the on-demand elder care market is becoming increasingly popular among startups and investors due to its ever-growing consumer size. This interest is further backed by the fact that the home healthcare industry is valued at $80-100 billion per year in the US and employs thousands of contract workers. Also, recent changes in health care law (i.e., the Affordable Care Act) that incentivize homecare provision are another reason why startups well positioned to raise funds and continue to grow.

Popular Mobile Health Apps Fail to Serve Vulnerable Populations

  • According to this Medical Xpress report, a recent study by University of California, San Francisco researchers revealed that top-rated mobile health apps offer little to help vulnerable patients who might benefit most from these tools. Participants in the study, all of whom were English speakers who routinely used the Internet prior to the study, but did not all use tablets or smartphones, expressed frustration about the intuitiveness and usability of the apps. Study participants were almost universally unable to productively use the apps, completing only half of the data-entry tasks across all apps, and even less successfully retrieving data from the apps. The study results suggest that health app developers should involve target patient populations in the design of their applications.

The Modern Evolution of Aging-in-Place

  • This HomeCare Magazine article highlights the evolution of Personal Emergency Response Systems (PERS). Cloud-based technology available today allows caregivers to remotely check in on the daily activities of those they care for. For example, real-time insights picked up by motion sensors and cloud-based camera systems can be directly sent to a computer or mobile device.

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.

Now Accepting Applications for the 2016 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards

  • FCA, with support from The Rosalinde and Arthur Gilbert Foundation, is pleased to oversee the 9th annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards Program, which is now accepting applications until Friday, September 16, 2016, 5 p.m. (Pacific Time). The program promotes strengthening caregiving for people with Alzheimer's disease, and encouraging innovation in this field by both recognizing and rewarding the efforts of those who lead the way in addressing the needs of Alzheimer's disease caregivers. One $20,000 award will be given in each of the following categories: Creative Expression, Diverse/Multicultural Communities, and Policy and Advocacy. View FCA’s online scrapbook of past Caregiving Legacy Award winners 2008–2015.

Averting a Crisis: Funding a Bold Vision of Family Caregiving

  • Rajiv Mehta, FCA board member and project director of the Atlas of Caregiving Pilot, has written a new blog post that explores a possible better future for an aging America in crisis. His insights are based on the data collected from the Atlas of Caregiving Pilot, an in-depth study designed to help better understand caregiving, drive change, and create new caregiving policy and insights. 

FCA Call for Caregiver Stories for the News Media

  • FCA often receives requests from the news media seeking family caregivers served by FCA willing to be interviewed about their caregiving experience and how FCA has helped them. If you would like to share your caregiving stories and how FCA has helped you, please complete the online form to be added to the list of FCA's caregiver media ambassadors. 

Put Your Family Caregiving on the Map (from the Atlas of Caregiving Pilot)

  • The Atlas of Caregiving Pilot offers information on how caregivers can create their own care map, a helpful way to visually represent all the people and services involved in a family caregiving situation. Once completed, the map will show all the persons who are providing care and the relationships between them.

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 case studies from the first cohort of Linkage Lab grantees (includes information about their key objectives and strategies, successes, challenges, and lessons learned), free online learning modules for CBOs to build leadership and management capacity, and perspectives from Dr. Bruce Chernof on the importance of forming effective health care/CBO partnerships. 

The Community Research Center for Senior Health (CRC-SH) Offers 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.
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