The Caregiving Exchange
Winter 2016
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From the President's Desk 
The first Caregiving in the U.S. Report (1997)
Last month was a milestone for the National Alliance for Caregiving - our 20th birthday. We've seen a lot of changes since we first opened our doors in 1996.
We began as a joint effort among the National Association of Area Agencies on Aging (n4a), the American Society on Aging, AARP, the National Council on Aging, and the Department of Veterans Affairs. Since those early meetings, we have expanded our membership to include more than 50 national organizations, including not-for-profits, for-profits, and government agencies dedicated to advancing family caregiving through research, innovation, and advocacy.
We're still dedicated to the proposition that better research, technological and delivery system innovation, and national advocacy can improve the lives of America's caregivers. To that end, the 2016 year ahead includes new focus areas for our work.
On February 23rd, we were honored to release
On Pins & Needles: Caregivers of Adults with Mental Illness with colleagues at Mental Health America and the National Alliance on Mental Illness. The study identifies startling inadequacies in the U.S. health care system in meeting the needs of families who manage moderate-to-serious mental illness. U.S. Senators Kelly Ayotte and Richard Blumenthal spoke at the report release.
In March, we will lead a national discussion about the future of family caregiving with our state and local caregiving advocates. Hosted at the American Society on Aging (ASA) meeting, The Next 20 Years in Family Caregiving will be held on March 21, 2016, in conjunction with the ASA meeting.
The one-day event features national experts on caregiving, healthcare reform, health technologies, and aging and disability issues. The conference will provide caregiving experts and advocates the chance to collaborate on the future of caregiving.
Finally, we are thrilled to announce that we are working with the National Cancer Institute and the Cancer Support Community on a white paper to articulate the needs of family caregivers who are caring for a loved one who is managing cancer. The paper, which will be released late Spring, will identify gaps in research and areas for future work in the field.
Each of these areas of work points to a larger discussion we've been having as a community. What will caregiving look like by the time we reach mid-century? How can we better enable systems - healthcare, workforce, and LTSS - to support family caregivers across silos? And how will technology, which has revolutionized our lives as consumers, change the way we care for those we love?
I invite you to be a part of this discussion. Let's strive to make the next 20 years in caregiving move from public awareness to action in support of caregivers.
Best,
Gail Gibson Hunt
President and CEO
In This Issue
From the President's Desk
New Research, Reports & Publications
Member Spotlight: ACSCAN
Updates from Members
Legislation & Advocacy Updates
Caregiving Coalitions Corner
Upcoming Events
Welcome New Members!
The Alliance would like to welcome the following new members to our coalition: DaVincian Healthcare, Humana, Astellas, Great Call, Transamerica, the American Cancer Society Cancer Action Network, Compassion & Choices, and the Cancer Support Community - Caregiver Registry.
Check out the updates from our membership, below, and the Member Spotlight!
New Research, Reports & Publications
The Journal of American Medicine (JAMA) published a new article on family caregivers and health. The research, authored in part by Dr. Jennifer Wolff, found that caregivers experience significant emotional difficulty in providing care but only one quarter seek support services.Read more here.
The Bipartisan Policy Center released a new report on America's Long-Term Care Crisis: Challenges in Financing and Delivery. Get it here.
An article in Healthcare Papers studied family caregiving trends within marginalized communities. The paper examines family caregiving practices in ethnocultural minority and LGBT older adults. How does caregiving differ across various communities? Read more here.
A study in Mathematica Policy Research studies twenty years of federal policy vis-à-vis family caregiving. The article reviews major federal policies that have benefited family caregivers over the past two decades. The article provides a brief history of contemporary family caregiving policy. Find out more here. Back to
Spotlight: American Cancer Society Cancer Action Network
Fendey Jean-Baptiste, Special Assistant to the CEO
The Alliance is honored that the American Cancer Society Cancer Action (ACS CAN) recently joined as members of our national coalition. We spoke with Dick Woodruff, Vice President of Federal Relations and Strategic Alliances, about his work at ACS CAN with patients and families. Mr. Woodruff began his career on Capitol Hill, followed by a presidential appointment to the National Endowment for the Arts. He also served as a Policy Advisor to the Alliance for Justice. In addition to his work, Mr. Woodruff was a family caregiver for his father, who had Alzheimer's disease.
Tackling Cancer through Research, Reform, and Education
The American Cancer Society Cancer Action Network (ACS CAN) is the legislative arm of the American Cancer Society. Mr. Woodruff describes their primary mission simply, saying, "We do public policy work in the effort to end death and suffering from cancer." Their federal and state initiatives approach the goal of ending cancer through a multi-faceted strategy: increasing funding for research, improving quality of life for patients, and improving public education on public health issues such as smoking cessation.
To read the full profile, click here.
Updates from Members
The Alliance for Aging Research
The Alliance for Aging Research will host a Twitter chat on March 23 at 1 p.m. ET on how to safely choose, take, store, and dispose of OTC medications. Topics will include: tips on how and when to take (and not take) medications, guidance on safely storing medications to keep them out of the hands of young children and those who might want to abuse medications, and info on how to safely dispose of unwanted medications. You can follow the chat @aging_research and use #SafeMedsChat. More info:
http://www.agingresearch.org/MedicationSafetyTwitterChat.
The Alliance for Balanced Pain Management (AfBPM)
The Alliance for Balanced Pain Management (AfBPM) is now a part of the Alliance for Patient Access (AfPA), a one-of-a-kind home for educational and advocacy initiatives impacting patient access to approved therapies. As part of AfPA, AfBPM will renew its focus on ensuring patient access to integrated, effective, and safe pain care by exploring access barriers to balanced pain management including multi-modal analgesia.
In 2016, AfBPM will develop educational materials, initiate an earned media campaign, develop a road map of access barriers, and convene an educational stakeholder Summit. For more information, email AfBPM at info@alliancebpm.org.
Compassion & Choices
Compassion & Choices is retooling its website - www.compassionandchoices.org. There will be more information on Federal and State Advocacy, End-of Life-Consulting, National Programs, End of Life Consulting, and Litigation.
The website includes advance directives, having a conversation about end-of-life goals and values with care providers and family members and promoting consumer-centered care at the end of life.
Legislation & Advocacy Updates
Fendey Jean-Baptiste, Special Assistant to the CEO
New Federal Budget - FY2017
The President released a new budget for FY2017. The new budget flatlines support for Alzheimer's disease and related dementia but provides a slight increase in funding for programs for older adults. For more info, check out the HHS Fact Sheet here or the ACL Budget Table, here.
Older Americans Act
The Older American Act Reauthorization Act (S. 192) remains stalled in the House after passing the Senate in 2015. Advocates are encouraged to reach out to their members of Congress, especially Republicans, to express the bill's importance to family caregivers. Click here for an OAA Fact Sheet.
Tax Credits for Family Caregivers
Senator Amy Klobuchar (D-MN) continues to push the Americans Giving Care to Elders Act, a proposal which would amend the Internal Revenue Code to allow caregivers a tax credit for up to $6,000 of the eldercare expenses accumulated by their parents. For more on this bill, click here.
2016 Presidential Candidate Proposals:
Former Secretary of State and Presidential Candidate Hillary Clinton recently released a "Plan to Invest in the Caring Economy: Recognizing the Value of Family Caregivers and Home Care Workers." The plan includes caregiver tax credits for family caregivers, social security credits, and would expand existing respite supports. Politico has the plan here.
Caregiving Advocates Corner
Rebecca F. Kauma, Caregiving Advocacy Fellow
Hot Off The Presses! Caregivers of Adults with Mental Illness
The Alliance released its new report, On Pins & Needles: Caregivers of Adults with Mental Illness, on Tuesday, February 23rd in a Capitol Hill briefing. Over 50 organizations were represented and we were honored to host remarks from Senator Kelly Ayotte (R-NH) and Senator Richard Blumenthal (D-CT). The report was conducted in partnership with Mental Health America and the National Alliance on Mental Illness. It examines the unique challenges caregivers of adults with mental illness confront everyday.
To learn more about the report, please visit caregiving.org/mentalhealth.
The 10th Annual National Caregiver Advocates Conference
Save the date for our 10th Annual National Caregiving Advocates Conference. Our theme is "The Next 20 Years in Family Caregiving." The conference will be held on Monday, March 21, 2016 in conjunction with the American Society on Aging meeting in Washington, D.C.
The Conference will feature presentations on topics such as: the role of caregivers in the early detection of dementia, policy perspectives on family caregiving, family caregiving and home-based-care, the state of caregiving today, and a table topics luncheon featuring experts in the aging, disability, and caregiving fields.
There are only 10 seats left, so register now by clicking here!
Want to learn more about building a coalition? Would you like to connect with other caregiving advocates? Email RebeccaKauma@caregiving.org.
Upcoming Events in Caregiving & Aging
American Society on Aging Conference
March 20-24, 2016 | Washington, DC
From March 20-24, 2016, nearly 3,000 professionals will meet in Washington, D.C., to engage with each other on a multitude of issues affecting our older adult population. The topics covered at the conference reflect the issues that all professionals face today. They are multifaceted and multidisciplinary, and go beyond the boundaries of geography and discipline. Registration for the conference is now open - learn more here.
Join the National Alliance for Caregiving on March 21st for "The Next 20 Years in Caregiving" which will be hosted at ASA! Register here.
2016 BIO International Convention
June 6-9, 2016 | San Francisco, CA
The global event for biotechnology returns to the birthplace of biotech, San Francisco, California. The region continues to grow and advance biomedical innovation while continuing to offer programs and services to support to bring new medical advances to patients. Imagine all of the powerful partnerships when these powerful communities of innovation come together - and learn more here.
n4a Annual Conference & Tradeshow
July 24-28, 2016 | San Diego, CA
The National Association of Area Agencies on Aging (n4a) Annual Conference & Tradeshow is the Conference that provides aging professionals with the latest information on trends in Home and Community-Based Services, Long-Term Services and Supports, Older Americans Act, Medicaid, Medicare and Integrated Care, along with practical tools, techniques and best practices to implement them. The call for proposals is now open, until October 30, 2015. Learn more here.
If you would like the Alliance's President and CEO Gail Hunt, to present on caregiving issues at your upcoming conference, please emailfendey@caregiving.org.
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National Alliance for Caregiving
4720 Montgomery Lane, Suite 205
Bethesda, Maryland 20814, United States
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