The Caregiving Exchange
July/August 2015
STAY CONNECTED
From the President's Desk I was honored to be invited to attend the 2015 White House Conference on Aging this July. The White House Conference on Aging, held every ten years, is a significant event in the world of aging, and the prime spot given to caregiving on the opening panel shows how important the topic is to older Americans and their loved ones. As the issue of family caregiving grows, the White House and Congress will have to increase their focus on it to help support caregivers and their needs.
Other topics of interest covered at the conference were technology, retirement security, and healthy aging. In case you missed it, videos from the conference are available online now.
On the home front, the Caregiving in the U.S. 2015 report was featured in Forbes and the New York Times, and two new special reports on the data are available on our website. We have established the advisory committee for a new project with Mental Health America on caregivers of people with severe mental illness. And we are looking forward to traveling to Gothenburg, Sweden, to the 3rd Annual Meeting of theInternational Alliance of Carer Organizations, and the 6th International Carers Conference, to engage in a global dialogue on caregiving.
As we approach the second half of the year, feel free to reach out to our team to share interesting news from your caregiving work.
Hope the rest of your summer is great,
Gail Gibson Hunt
President and Chief Executive Officer
In This Issue
From the President's Desk
Research, Reports & Publications
Member Updates
Legislation & Advocacy Updates
Caregiving Coalitions Corner
International Alliance of Carer Organizations
Upcoming Events
New Research, Reports & Publications
Two new special reports from Caregiving in the U.S. 2015 have recently been released. The reports, Caregivers of Persons 18-49 and Caregivers of Persons Age 50 and Older, are a breakdown of the caregiver research around the age of the care recipient. Additionally, the archive of the July 15th webinar and the presentation slides are now available on the study's website.
Pew Research published a new study, "Family Support in Graying Societies", which examines how the United States, Germany, and Italy are coping with aging populations. The report shows that Germany and Italy may provide a window into the United States' future in aging, as both countries' aging populations are currently where the United States' population is predicted to reach by 2050. Learn more about the research findings.
A study in the Journal of Pain and Symptom Management analyzes the characteristics of those caregivers reporting a worse than expected caregiving experience for end-of-life care. The responses were taken from the South Australian Health Omnibus survey from 2000 to 2007. The authors found that a worse or much worse than expected experience was significantly associated with gender and with level of care provided. Learn more here.
Valuing the Invaluable: 2015 Update, Undeniable Progress but Big Gaps Remain is a new report on family caregiving from the AARP Public Policy Institute. It updates national and state estimates of the economic value of family caregiving using the most current data available. It also explains the challenges that family caregivers face today, highlights key policy developments for family caregivers since the last Valuing the Invaluable report was released in 2011, and provides recommendations to better support caregiving families.
Researchers in The Journals of Gerontology examined the relationship between caring for older parents and financial well-being of female caregivers. The study showed that female caregivers were more likely than non-caregivers to have a lower household income at later observation points. There appears to be a cycle of parental care and lower household income for women, which should be an area of concern for policymakers. The article is available here.
Updates from Members
We would like to welcome the Pulmonary Hypertension Association (PHA) as new members to the National Alliance for Caregiving.
myPHA Caregiver Site
This past April, the Pulmonary Hypertension Association launched an online social network exclusively for patients and caregivers affected by pulmonary hypertension. This online community, myPHA, offers caregivers an essential link to connecting with others dealing with this rare and serious diagnosis. The registration process for the site is customized to ensure an experience that fits the user. Caregivers are automatically added to a private caregiving discussion group, and offered a resource page with articles and webinars that are relevant to their specific circumstance - whether they be a parent, caring for someone with a particular kind of PH, or a spousal caregiver. myPHAis a strong addition to many similar sites that stand as a unique solution to the psychosocial challenges of rare disease caregiving - contact Olivia May to learn more about the site or visit it at www.myPHAssociation.org
Digital Advocacy Institute - Webinar Series
Improving family caregiving takes tireless research and constant innovation, but also relies on effective advocacy. The Digital Advocacy Institute's 2015 webinar series focuses on coalition building and legislative lobbying advice for advocacy groups. Register for the next installment on September 3rd and hear directly from Legislative Correspondents on the path of advocacy materials. In addition to webinars, they have a comprehensive guide to online advocacy. They walk you through every aspect of digital activism, from a basic explanation of social media all the way up to integrating offline strategy with the online world. If you want to expand your reach and magnify your advocacy initiatives, explore the resources on the Digital Advocacy Institute's websitetoday!
New Report on Immunization
On July 29th, the Alliance for Aging Research released Our Best Shot: Expanding Prevention through Vaccination in Older Adults, an empirically-based report on the determinants driving underutilization of: influenza, pneumococcal, tetanus, and shingles vaccines in seniors. The four vaccines covered in the report are the most recommended vaccines for seniors, by physicians, due to their effectiveness of preventing conditions with comparatively high-incidence-rates and disease burdens.
Despite the vaccines being clinically-effective, cost-effective, and covered to varying degrees by health insurance, the rates of use among older adults are lower than the reasonable standard set in the Health People 2020 Initiative.
The fundamental factors depressing vaccination rates for seniors include educational deficiencies, lack of financial resources, and inadequate health care. The report recommends a range of policies to mitigate their adverse effects on vaccination rates.
The white paper was authored by Richard Manning, Ph.D. of Bates White Economic Consulting LLC and can be found here.
Military Caregiver Webinar Series
Easter Seals partners with the National Alliance for Caregiving and other Caregiver and Veteran service organizations to offer a monthly webinar series expressly for Military Caregivers.
Previous topics have included: Caregiver Resilience; Intimacy and Military Caregiver Relations; Chronic Sorrow; and many others!
The next webinar is scheduled for Thursday, August 27th (1PM CT/2PM EST) and is co-hosted with the Rosalynn Carter Institute for Caregiving. The hosts are privileged to have Annie Remsburg as the guest speaker on the topic of "Parents as Caregivers." Annie, her son, Army Ranger Sgt. 1st Class Cory Remsburg, and husband, Craig Remsburg were featured as part of President Barack Obama's 2014 State of the Union Address.
To register and hear more or to listen to archived sessions, please visit www.easterseals.com/carewebinar.
DOL Clarifies Leave Protections for Some Siblings
There are over one million aging caregivers caring for adult relatives with disabilities. When aging parents are no longer able to provide care, siblings frequently take over the primary caregiving role. However, there has been a great deal of confusion about their eligibility for leave protections under the Family and Medical Leave Act (FMLA) during this transition. In general, FMLA does not currently cover siblings. Over the past year the National Council on Aging, Sibling Leadership Network, and other disability partners worked with the Department of Labor to issue new guidance clarifying eligibility for this population of caregivers. A fact sheet on FMLA is also available.
New Program on Alzheimer's Care
The Alzheimer's Foundation of America (AFA) has announced a new program-available through its Dementia Care Professionals of America (DCPA) division-that aims to transform the standard of dementia care. "AFA Partners in Care: Supporting Individuals Living with Dementia," is a six-hour comprehensive training video that underscores the importance of relationship-building in dementia care. Participants who complete the training can take an exam to demonstrate their proficiency in the subject matter and become an AFA-Certified Dementia Care Partner. This certification, renewable each year, will require that individuals earn continuing education credits in dementia care-related core competencies. For more information, contact Kristen Cribbs, AFA's deputy director of educational services, at 866-232-8484 orkcribbs@alzfdn.org.
Legislation & Advocacy Updates
With August recess in full effect, things in Washington have slowed a bit. Below is a list of legislation relevant to family caregivers and their advocates that the Alliance will continue to follow when Congress is back in session.
Recently-Introduced Caregiver Legislation
The Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2015 or the RAISE Family Caregivers Act - S.1719 and H.R. 3099
The bill was recently introduced in the Senate by Senator Collins (R-ME) and Senator Baldwin (D-WI) and Representative Greg Harper (R-MS) and Representative Kathy Castor (D-FL) in the House. The bill contains three main objectives: directs the Department of Health and Human Services (HHS) to develop, maintain, and periodically update a National Family Caregiving Strategy; directs HHS to convene a Family Caregiving Advisory Council to advise it on recognizing and supporting family caregivers; and mandates that federal departments and agencies must share with HHS any data they maintain that HHS needs to prepare the initial and updated Strategies. The Alliance supports this bill.
The Family and Medical Insurance Leave or FAMILY Act - S. 786 and H.R. 1439
Sponsored by Rep. Rosa DeLauro (D-CT) in the House and Sen. Kirsten Gillibrand (D-NY) in the Senate, the FAMILY Act would provide workers with up to 12 weeks of partial income when they take time for their own serious health condition, including pregnancy and childbirth recovery; the serious health condition of a child, parent, spouse or domestic partner; the birth or adoption of a child; and/or for particular military caregiving and leave purposes. The benefit would be administered through a new Office of Paid Family and Medical Leave within the Social Security Administration. Payroll contributions would cover both insurance benefits and administrative costs.
Military and Veteran Caregiver Services Improvement Act of 2015 - S.1085 andH.R. 1969
Sponsored by Sen. Patty Murray (D-WA) and Rep. James Langevin (D-RI), the bill would expand eligibility for the family caregiver program of the Department of Veterans Affairs (VA) to include members of the Armed Forces or veterans who are seriously injured or who became ill on active duty prior to September 11, 2001 (currently, limited to service after September 11, 2001).
Social Security Caregiver Credit Act of 2015 - H.R. 3377
Representative Nita Lowey (D-NY) recently reintroduced her Social Security Caregiver Credit bill, which would provide caregivers with a credit to be added to earnings to calculate total deemed wages. Anyone who spends at least 80 hours a month providing care to a dependent relative under the age of 12 or a chronically dependent relative is eligible to claim the credit for up to 60 months total. A "chronically dependent relative" can be a child, grandchild, niece, nephew, parent, aunt, or uncle (of such individual or the individual's spouse).The Alliance supports this bill.
State
The CARE Act - Passed in AK, NJ, NM, OK, VA, WV, CO, NH, NV, MS, CT, IL,OR, NY, RE, and now ME, the Care Act is model legislation that mandates hospitals offer training to family and friends who care for patients after they are discharged from the hospital. The Alliance will continue to monitor its passage and implementation in the states.
Other Updates
S.192 - Older Americans Act Reauthorization Act of 2015 - S.192 Update:
S. 192 was recently passed in the Senate with bipartisan support! We now turn to the House in September to see if they will take up the Senate bill or come up with their own offering to the OAA reauthorization.
21st Century Cures Act - H.R.6 Update:
H.R. 6 Passed in the House on July 10th. The Senate is currently working on their own innovations bill, currently being called "America's Leadership in Medical Innovations for Patients." Sen. Alexander in the HELP committee is leading this effort on the Senate side and we will continue to monitor future developments.
Caregiving Coalitions Corner
Charlotte Dodge, Advocacy Coordinator
Advocacy Task Force
Visit our website and get to know our coalition all-stars! As part of our national network of caregiving coalitions, the Advocacy Task Force (ATF), consists of a working group of leaders and advocates that represent the diverse interests of family caregivers from across the United States. The ATF convenes during monthly calls to share coalition strategies and updates and help the Alliance set priorities for our national work. You can read more about the ATF on our website here: http://www.caregiving.org/coalitions/natlnetwork/
Advocacy Tool-Kits
The Alliance is currently working on developing advocacy tool-kits for caregiving advocates and coalitions to use to engage policy and business leaders on a range of topics relevant to caregivers. Stay tuned for updates and opportunities to get involved with our tool-kits and Phase II of our Caregiving Champions program.
Want to learn more about building a coalition? Would you like to connect with other caregiving advocates? Email me at Charlotte@caregiving.org so we can connect.
Thanks everyone!
International Alliance of Carer Organizations
It has been a productive year for the International Alliance of Carer Organizations (IACO). Caregivers Israel was accepted as a member of IACO, and we now have members representing caregivers in 11 nations.
In conjunction with our Canadian colleagues in IACO, we have redesigned the IACO website and added more content. Content is planned to be added on a rolling basis.
In July, we had a meeting with the Pan American Health Organization (PAHO) to discuss caregiving in Latin America. We indicated that we were looking for sponsors for a meeting in Latin America for nations wishing to build or expand the caregiving infrastructure. Staff from PAHO identified several nations which we should approach, and has agreed to work with us on this initiative.
The Carer Toolkit, a series of fact sheets for nations and/or NGOs to consider when developing a caregiving infrastructure, is another IACO project in search of support. These fact sheets include information on employed caregivers, health implications of caregiving, respite care, and other topics.
Finally, this week we leave for Gothenburg, Sweden where we will be hosting our 3rd Annual Meeting. Immediately following, we will be attending and presenting at the 6th International Carers Conference.
Upcoming Events in Caregiving & Aging
6th International Carers Conference
September 3-6, 2015 | Gothenburg, Sweden
Themes for the International Carers Conference include: the health, social care, and well-being of caregivers; combining work and care; paying for care; and technology-enabled care and support. Registration for the conference is now open - learn more here.
Global Genes Rare Patient Advocacy Summit
September 24-25, 2015 | Huntington Beach, CA
The goal of this year's RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades. Registration for the summit is now open -
learn more here.
BIO Patient and Health Advocacy Summit
October 6-7, 2015 | Washington, DC
The BIO Patient and Health Advocacy Summit brings together voluntary health organizations and the biotechnology industry for two days of policy-driven panel discussions, best practice seminars and invaluable networking opportunities. Learn more on the summit here.
GSA's 68th Annual Scientific Meeting
November 18-22, 2015 | Orlando, FL
GSA's 68th Annual Scientific Meeting brings together more than 4,000 of the brightest minds in the field of aging. This meeting is the premier gathering of gerontologists from both the United States and around the world. They participate in over 400 scientific sessions including symposia, paper, and poster presentations. The 2015 theme is "Aging as a Lifelong Process," which highlights the fact that what gerontologists study is actually the cumulative outcome of lifelong events that culminate during old age. Registration for the meeting is now open - 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 emailstephanie@caregiving.org.
STAY CONNECTED
_____________________________
National Alliance for Caregiving
On July 29th, the Alliance for Aging Research released Our Best Shot: Expanding Prevention through Vaccination in Older Adults, an empirically-based report on the determinants driving underutilization of: influenza, pneumococcal, tetanus, and shingles vaccines in seniors. The four vaccines covered in the report are the most recommended vaccines for seniors, by physicians, due to their effectiveness of preventing conditions with comparatively high-incidence-rates and disease burdens.
Despite the vaccines being clinically-effective, cost-effective, and covered to varying degrees by health insurance, the rates of use among older adults are lower than the reasonable standard set in the Health People 2020 Initiative.
The fundamental factors depressing vaccination rates for seniors include educational deficiencies, lack of financial resources, and inadequate health care. The report recommends a range of policies to mitigate their adverse effects on vaccination rates.
The white paper was authored by Richard Manning, Ph.D. of Bates White Economic Consulting LLC and can be found here.
Military Caregiver Webinar Series
Easter Seals partners with the National Alliance for Caregiving and other Caregiver and Veteran service organizations to offer a monthly webinar series expressly for Military Caregivers.
Previous topics have included: Caregiver Resilience; Intimacy and Military Caregiver Relations; Chronic Sorrow; and many others!
The next webinar is scheduled for Thursday, August 27th (1PM CT/2PM EST) and is co-hosted with the Rosalynn Carter Institute for Caregiving. The hosts are privileged to have Annie Remsburg as the guest speaker on the topic of "Parents as Caregivers." Annie, her son, Army Ranger Sgt. 1st Class Cory Remsburg, and husband, Craig Remsburg were featured as part of President Barack Obama's 2014 State of the Union Address.
To register and hear more or to listen to archived sessions, please visit www.easterseals.com/carewebinar.
DOL Clarifies Leave Protections for Some Siblings
There are over one million aging caregivers caring for adult relatives with disabilities. When aging parents are no longer able to provide care, siblings frequently take over the primary caregiving role. However, there has been a great deal of confusion about their eligibility for leave protections under the Family and Medical Leave Act (FMLA) during this transition. In general, FMLA does not currently cover siblings. Over the past year the National Council on Aging, Sibling Leadership Network, and other disability partners worked with the Department of Labor to issue new guidance clarifying eligibility for this population of caregivers. A fact sheet on FMLA is also available.
New Program on Alzheimer's Care
The Alzheimer's Foundation of America (AFA) has announced a new program-available through its Dementia Care Professionals of America (DCPA) division-that aims to transform the standard of dementia care. "AFA Partners in Care: Supporting Individuals Living with Dementia," is a six-hour comprehensive training video that underscores the importance of relationship-building in dementia care. Participants who complete the training can take an exam to demonstrate their proficiency in the subject matter and become an AFA-Certified Dementia Care Partner. This certification, renewable each year, will require that individuals earn continuing education credits in dementia care-related core competencies. For more information, contact Kristen Cribbs, AFA's deputy director of educational services, at 866-232-8484 orkcribbs@alzfdn.org.
Legislation & Advocacy Updates
With August recess in full effect, things in Washington have slowed a bit. Below is a list of legislation relevant to family caregivers and their advocates that the Alliance will continue to follow when Congress is back in session.
Recently-Introduced Caregiver Legislation
The Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2015 or the RAISE Family Caregivers Act - S.1719 and H.R. 3099
The bill was recently introduced in the Senate by Senator Collins (R-ME) and Senator Baldwin (D-WI) and Representative Greg Harper (R-MS) and Representative Kathy Castor (D-FL) in the House. The bill contains three main objectives: directs the Department of Health and Human Services (HHS) to develop, maintain, and periodically update a National Family Caregiving Strategy; directs HHS to convene a Family Caregiving Advisory Council to advise it on recognizing and supporting family caregivers; and mandates that federal departments and agencies must share with HHS any data they maintain that HHS needs to prepare the initial and updated Strategies. The Alliance supports this bill.
The Family and Medical Insurance Leave or FAMILY Act - S. 786 and H.R. 1439
Sponsored by Rep. Rosa DeLauro (D-CT) in the House and Sen. Kirsten Gillibrand (D-NY) in the Senate, the FAMILY Act would provide workers with up to 12 weeks of partial income when they take time for their own serious health condition, including pregnancy and childbirth recovery; the serious health condition of a child, parent, spouse or domestic partner; the birth or adoption of a child; and/or for particular military caregiving and leave purposes. The benefit would be administered through a new Office of Paid Family and Medical Leave within the Social Security Administration. Payroll contributions would cover both insurance benefits and administrative costs.
Military and Veteran Caregiver Services Improvement Act of 2015 - S.1085 andH.R. 1969
Sponsored by Sen. Patty Murray (D-WA) and Rep. James Langevin (D-RI), the bill would expand eligibility for the family caregiver program of the Department of Veterans Affairs (VA) to include members of the Armed Forces or veterans who are seriously injured or who became ill on active duty prior to September 11, 2001 (currently, limited to service after September 11, 2001).
Social Security Caregiver Credit Act of 2015 - H.R. 3377
Representative Nita Lowey (D-NY) recently reintroduced her Social Security Caregiver Credit bill, which would provide caregivers with a credit to be added to earnings to calculate total deemed wages. Anyone who spends at least 80 hours a month providing care to a dependent relative under the age of 12 or a chronically dependent relative is eligible to claim the credit for up to 60 months total. A "chronically dependent relative" can be a child, grandchild, niece, nephew, parent, aunt, or uncle (of such individual or the individual's spouse).The Alliance supports this bill.
State
The CARE Act - Passed in AK, NJ, NM, OK, VA, WV, CO, NH, NV, MS, CT, IL,OR, NY, RE, and now ME, the Care Act is model legislation that mandates hospitals offer training to family and friends who care for patients after they are discharged from the hospital. The Alliance will continue to monitor its passage and implementation in the states.
Other Updates
S.192 - Older Americans Act Reauthorization Act of 2015 - S.192 Update:
S. 192 was recently passed in the Senate with bipartisan support! We now turn to the House in September to see if they will take up the Senate bill or come up with their own offering to the OAA reauthorization.
21st Century Cures Act - H.R.6 Update:
H.R. 6 Passed in the House on July 10th. The Senate is currently working on their own innovations bill, currently being called "America's Leadership in Medical Innovations for Patients." Sen. Alexander in the HELP committee is leading this effort on the Senate side and we will continue to monitor future developments.
Caregiving Coalitions Corner
Charlotte Dodge, Advocacy Coordinator
Advocacy Task Force
Visit our website and get to know our coalition all-stars! As part of our national network of caregiving coalitions, the Advocacy Task Force (ATF), consists of a working group of leaders and advocates that represent the diverse interests of family caregivers from across the United States. The ATF convenes during monthly calls to share coalition strategies and updates and help the Alliance set priorities for our national work. You can read more about the ATF on our website here: http://www.caregiving.org/coalitions/natlnetwork/
Advocacy Tool-Kits
The Alliance is currently working on developing advocacy tool-kits for caregiving advocates and coalitions to use to engage policy and business leaders on a range of topics relevant to caregivers. Stay tuned for updates and opportunities to get involved with our tool-kits and Phase II of our Caregiving Champions program.
Want to learn more about building a coalition? Would you like to connect with other caregiving advocates? Email me at Charlotte@caregiving.org so we can connect.
Thanks everyone!
International Alliance of Carer Organizations
It has been a productive year for the International Alliance of Carer Organizations (IACO). Caregivers Israel was accepted as a member of IACO, and we now have members representing caregivers in 11 nations.
In conjunction with our Canadian colleagues in IACO, we have redesigned the IACO website and added more content. Content is planned to be added on a rolling basis.
In July, we had a meeting with the Pan American Health Organization (PAHO) to discuss caregiving in Latin America. We indicated that we were looking for sponsors for a meeting in Latin America for nations wishing to build or expand the caregiving infrastructure. Staff from PAHO identified several nations which we should approach, and has agreed to work with us on this initiative.
The Carer Toolkit, a series of fact sheets for nations and/or NGOs to consider when developing a caregiving infrastructure, is another IACO project in search of support. These fact sheets include information on employed caregivers, health implications of caregiving, respite care, and other topics.
Finally, this week we leave for Gothenburg, Sweden where we will be hosting our 3rd Annual Meeting. Immediately following, we will be attending and presenting at the 6th International Carers Conference.
Upcoming Events in Caregiving & Aging
6th International Carers Conference
September 3-6, 2015 | Gothenburg, Sweden
Themes for the International Carers Conference include: the health, social care, and well-being of caregivers; combining work and care; paying for care; and technology-enabled care and support. Registration for the conference is now open - learn more here.
Global Genes Rare Patient Advocacy Summit
September 24-25, 2015 | Huntington Beach, CA
The goal of this year's RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades. Registration for the summit is now open -
learn more here.
BIO Patient and Health Advocacy Summit
October 6-7, 2015 | Washington, DC
The BIO Patient and Health Advocacy Summit brings together voluntary health organizations and the biotechnology industry for two days of policy-driven panel discussions, best practice seminars and invaluable networking opportunities. Learn more on the summit here.
GSA's 68th Annual Scientific Meeting
November 18-22, 2015 | Orlando, FL
GSA's 68th Annual Scientific Meeting brings together more than 4,000 of the brightest minds in the field of aging. This meeting is the premier gathering of gerontologists from both the United States and around the world. They participate in over 400 scientific sessions including symposia, paper, and poster presentations. The 2015 theme is "Aging as a Lifelong Process," which highlights the fact that what gerontologists study is actually the cumulative outcome of lifelong events that culminate during old age. Registration for the meeting is now open - 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 emailstephanie@caregiving.org.
STAY CONNECTED
_____________________________
National Alliance for Caregiving
4720 Montgomery Lane, Suite 205
Bethesda, Maryland 20814 United States
___________________________
___________________________
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