The Caregiving Exchange
Spring 2016
STAY CONNECTED
From the President's Desk Every May, we celebrate aging adults as part of "Older Americans Month" hosted by the Administration for Community Living. Just over 34 million Americans are caring for a loved one age 50 or older and nearly 1 in 10 family caregivers are themselves 75 or older. When we celebrate older adults, we should remember that older adults can be caregiver, care recipient, or both.
From a policy perspective, this month offers us a chance to celebrate victories with the Older Americans Act and identify new areas of growth. The OAA Reauthorization Act of 2016 closes an important loophole, now allowing aging parents (55 or older) of children with special needs to receive caregiver services after those children turn 18. Still, much work remains to be done. We're excited to join a Twitter conversation with the Leadership Council of Aging Organizations tomorrow, Tuesday, May 24th at 1pm ET on the need to fully fund this critical piece of legislation. (Learn more here or join on Twitter with #WeAreOAA.)
Other populations of caregivers need additional focus too. That's why we've been working with nationally recognized researchers at the National Cancer Institute and Cancer Support Community on Cancer Caregiving in the U.S., a new white paper to identify the challenges facing caregivers of a loved one for cancer. Save the date for the paper's release via national webinar on June 20th.
As always, we continue to look for new and better ways to support America's caregivers.
Best,
Gail Gibson Hunt
President and CEO
In This Issue:
- From the President's Desk
- New Research, Reports & Publications
- Member Spotlight: CaptionCall
- Legislation & Advocacy Updates
- Caregiving Coalitions Corner
- Upcoming Events
The Alliance would like to welcome the following new members to our coalition: Alkermes, CaptionCall, and the American Cancer Society. Check out the updates from our membership, below, and the Member Spotlight.
The Alliance welcomes two new staff members: Mike Wittke, Director of Advocacy, and Parys Grigsby, Special Assistant to the CEO. Learn more about them and get their contact information at www.caregiving.org/about/our-team.
New Research, Reports & Publications
The Alzheimer's & Dementia Journal published an article on the work of the Alzheimer's Association and other national experts to develop milestones for the National Alzheimer's Plan related to care and support.Read it here.
The Journal of Policy and Practice in Intellectual Disabilities released a new study of family caregivers of aging adults with down syndrome, finding that "aging adults with Down syndrome may present earlier-and possibly more severe and more health-related-caregiving challenges to their parents and siblings." Abstract here.
The Conversation Project launched a new tool kit for family caregivers and individuals to discuss end-of-life decision making in the context of Alzheimer's and dementia. Learn more here.
The Journal of Social Work in End-of-Life & Palliative Care released a special edition focused on family caregiving. Check it out here.
Member Spotlight: CaptionCall
C. Grace Whiting, JD, Director of Strategic Partnerships
The Alliance is honored that CaptionCall has recently joined as members of our national coalition. We spoke with Bruce Peterson, Vice President of Marketing and Jessica Trentman, Director of Marketing. CaptionCall provides telephones for anyone with hearing loss who needs captions to use the phone effectively. Similar to captioned television, CaptionCall communication assistants use voice recognition technology to quickly provide written captions of what callers say on a large, easy-to-read screen on a CaptionCall phone or compatible mobile tablet. Under the requirements of the Americans with Disabilities Act, individuals with hearing loss can receive captioning technology at no or very low cost.
Tell me how a relay device can help a family caregiver who is caring for a loved one with hearing loss.
As people age, there are always those people who love them - who are looking out for them, taking care of them. We began to notice that a significant component of our service went towards helping the person who is caring for the customer. One of the first people we served talked about how exciting it was to again talk with his adult children on the phone who lived in another state. It improved communication both for the utilitarian aspects of care coordination, as well as the social connection.
To read the full profile, click here.
Legislation & Advocacy Updates
Michael Reese Wittke, Director of Advocacy
Older Americans Act
The Older Americans Reauthorization Act (S. 192) - after being stalled for some time in committee on the House side, the Senate unanimously approved House amendments. The President signed the OAA into law on April 19, 2016, extending the legislation for 3 years. The bill authorized specific funding levels for programs supported by the OAA which will have an increase of 6% over the next 3 years. The bipartisan legislation supports the National Family Caregiver Support Program and other social and nutrition services for nearly 12 million older Americans.
Lifespan Respite Reauthorization
The National Alliance for Caregiving recently signed on to a letter addressed toleadership in the House Appropriations Subcommittee on Labor, Health and Human Services, and Education requesting an increase from $3.0 million to $5.0 million for the Lifespan Respite Reauthorization Act (H.R. 3913) - the amount included in the President's budget. The letter also requests support for the National Family Caregiver Support Program to restore funding to pre-sequestration levels and continued increases for the Native American Caregiver Support Program.
Aging Committee Hearing - Finding a Cure: Assessing Progress Toward the Goal of Ending Alzheimer's by 2025
The Senate Aging Committee held a hearing on April 6, 2016, on the importance of Alzheimer's research and the need to support family caregivers. The hearing highlighted the tremendous personal and economic toll Alzheimer's disease has on the individual, the family, and our society. Witnesses for the hearing included:
Dr. Ronald Petersen, Chair of NAPA's Advisory Council on Alzheimer's Research, Care, and Services.
David Hyde Pierce, Award-winning actor, advocate, and former member of NAPA's Advisory Council on Alzheimer's Research, Care, and Services.
Polly Bradley, Director of Adult Day Services, Southern Maine Agency on Aging.
Lisa Baron, Executive Director, Memory Care Home Solutions.
Kevin and Avonte's Law
The U.S. Senate Judiciary Committee passed S.2614, safety and wandering legislation known as Kevin and Avonte's Law, by a vote of 15 to 5. The legislation aims to safeguard individuals who have autism or other conditions that may cause them to wander away from caregivers. The legislation is named in honor of two boys with autism who perished after wandering. The bill would reauthorize the expired Missing Alzheimer's Disease Patient Alert Program and include new provisions to support people with autism.
Social Security Caregiver Credit Act
Senator Christopher Murphy on March 18, 2016 announced the introduction of a companion bill (S. 2721) to Rep. Nita Lowey's Caregiver Credit bill, which was introduced last year. Sen. Murphy's legislation is very similar to Rep. Lowey's bill in the House except for expanded language to include sibling caregivers.
ACT Caucus Hill Briefing
The Assisting Caregivers Today (ACT) Caucus on May 10, 2016 held a briefing in the Capitol Building for Hill staff and other caregiving stakeholders to share information about family caregivers, federal programs that exist to support them, and the challenges they face. Among those presenting were: Kirsten Colello - Congressional Research Service (CRS), Ralph Loller, Centers for Medicare & Medicaid Services (CMS), Greg Link - Administration for Community Living (ACL), Meg Kabat - Department of Veterans Affairs (VA), and a family caregiver. More than 75 stakeholders and Congressional staff were in attendance.
Caregiving Advocates Corner
#WeAreOAA Chat - This Tuesday, 5/24 at 1pm EST
Join the #WeAreOAA chat in honor of Older Americans Month to discuss the Older Americans Act (OAA) and the need for investment in these important programs. Led by organizations from the Leadership Council of Aging Organizations (@LCAgingOrgs), this chat will provide an online forum for aging advocates, older Americans, and family caregivers to connect. Join us to:
Get background information on the OAA
Answer questions about why the OAA is important
Solicit stories from people whose lives have been impacted by the OAA
Get more info on the chat here.
#TalkBrainHealth Conversation Kit & Social Media Outreach
The National Alliance for Caregiving and the Alzheimer's Foundation of America are working together on a conversation tool kit for family caregivers to use when talking with their loved ones about brain health and dementia. The purpose of this project is to create a simple, easy to use tool, that can be viewed or printed and shared in a family meeting and determine how to approach an older adult who may be experiencing memory issues.
The original fact sheet was created in November 2015, and we have now received grant funding to update this fact sheet and translate the sheet into English and Spanish for use during November 2016 for National Family Caregivers Month and Alzheimer's Awareness Month. If you're involved in a family caregiving coalition and interested in volunteering for the working group who will be updating the fact sheet, email Grace at grace@caregiving.org by Friday, May 27. Volunteers will receive acknowledgement in the fact sheet and on the Alliance's website at www.caregiving.org.
Get Involved in the National Network of Caregiving Coalitions
Want to learn more about building a coalition? Would you like to connect with other caregiving advocates? Email mike@caregiving.org.
Upcoming Events in Caregiving, Aging, & Disability
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. Visit www.n4aconference.org to learn more.
National Home & Community-Based Services Conference
August 29 - September 1, 2016 | Washington, DC
While faced with new challenges, reduced budgets, and growing populations requiring more services, states are stronger than ever, and the work they do is reaching individuals and addressing their needs. The National HCBS Conference will include federal, state, and local policymakers and those who administer, manage, and deliver waiver and other HCBS programs. Learn more here.
Rare Patient Advocacy Summit
September 22 - 24, 2016 | Huntington Beach, CA
The goal of the RARE Patient Advocacy Summit is for patients, caregivers, and advocates in the rare disease community to walk away equipped with actionable next steps. It is open to those who have been recently diagnosed, those who are are building a disease community, those thinking about funding early research, those actively engaged in developing a treatment, or those have been advocating in rare disease for decades. Registration opens June 1 - learn more here.
2016 GSA Annual Scientific Meeting
November 16 - 20, 2016 | New Orleans, LA
GSA's Annual Scientific Meeting brings together 4,000 international experts and partners from academia, industry, government, and beyond to exchange information and to discuss the broader role of aging science. This meeting is the premier gathering of gerontologists from both the United States and around the world. Learn more and register here.
If you would like the Alliance's President and CEO Gail Hunt to present on caregiving issues at your upcoming conference, please emailparys@caregiving.org.
STAY CONNECTED
National Alliance for Caregiving
4720 Montgomery Lane, Suite 205
Bethesda, Maryland 20814, United States
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