Eight Countries Agree to Focus on Carers' Health and Wellbeing
HELSINKI, FINLAND- The second annual meeting of the International Alliance of Carer Organizations (IACO), currently the only global carer coalition, concluded last month on 4 June 2014. IACO is the first and only international coalition dedicated specifically to providing resources and advocacy for family carers at an international level.
Carers are family members, partners and friends who provide assistance with everyday tasks to persons with disabilities to enable them to remain in their community. This unpaid assistance, such as tube feedings, toileting and wound care, can be very complicated and time intensive.
The meeting included carer organizations from Sweden, Ireland, Finland, the United Kingdom, Australia, Canada, the United States and Eurocarers.
IACO was formed in 2012 to offer carers a voice through an international platform while discussing and campaigning ways to raise awareness of carer issues with international bodies, such as the United Nations and World Health Organization. The group is supported by Associate Members Right at Home International, BUPA of Australia and Novartis.
Representatives from each country met to share best practices on providing carers with a voice, focusing on working carers who juggle family and work responsibilities.
"Governments are facing economic pressures that make it difficult to continue funding social welfare programs for carers," said Gail Gibson Hunt, Secretariat for IACO and President and CEO of the National Alliance for Caregiving. "Employers can be a great partner in caring by providing supplemental resources and information that address the burden of supporting an aging or disabled loved one."
IACO additionally provides assistance and encourages countries interested in developing family carer organizations to join their initiative. The vision is to create a strong network of carer organizations across the nations as a support system while bringing additional visibility to their cause.
"IACO facilitates information sharing among countries while creating a cohesive direction to advocate for family caregiving internationally," said Blake Martin, Vice President of International Operations for Right at Home. "With our current presence in eight countries and expansion plans throughout the world, it is pertinent that we work together to understand the intricacies and needs of different countries' family carers. By doing so, we will be able to develop strategies to provide the best care for the elderly and disabled while paying close attention to the needs of those family members providing the care, as well."
About IACO
The International Alliance of Carer Organizations (IACO) is an international organization founded in 2012 by caregiving organizations from seven countries that provides cohesive direction, facilitates information sharing, and actively advocates for family caregiving at an international level. IACO members include both non-governmental organizations and multinational corporations that demonstrate an understanding of family carers, a willingness to collaborate and communicate, and a commitment to the IACO vision of establishing a global understanding and recognition of the integral role of carers to care recipients, health and social care systems, and society. For more information on IACO, please visit www.internationalcarers.org.
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Press Contact:
C. Grace Whiting, J.D.
Director, Communications & Coalitions
National Alliance for Caregiving
Phone: (301) 718-8444
Email: gracewhiting@caregiving.org
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Summer is here!
We've been working hard to support family caregiving at home and abroad. At the beginning of June, we convened the 2nd Annual Meeting of the International Alliance of Carer Organizations. Representatives from Australia, Canada, EuroCarers, Finland, Ireland, Sweden and the U.K. met in Helsinki, Finland, to discuss how to support family caregivers as the world ages (read the press release here). The meeting was made possible through generous support from the BUPA Foundation of Australia and home care company Right at Home. The Alliance also participated in the Eurocarers meeting, after which I flew to the other side of the world for the International Federation on Ageing's 12th Global Conference in Hyderabad, India, where I presented on working family caregivers.
The upcoming months are also exciting as we will release several caregiving-focused papers. Be on the lookout for our joint White Paper on caregiving and technology, building on the work of our national panel at the Palo Alto event on "Catalyzing Technology to Support Family Caregivers." We're also working with the Alzheimer's Foundation of America to finalize and distribute a paper on Implementing the National Alzheimer's Plan in Your State.
The Alliance is excited to welcome three new member organizations in recent months: the Social Security Administration (SSA), Forest Laboratories, and home care company Right at Home. Ben Belton, Senior Advisor to the Acting Commissioner of Social Security, is representing SSA as an ex officio member of the Alliance's Board of Directors.
For members, we're offering a three part, summer webinar series that examines how family caregivers fit into new models of healthcare delivery. In case you missed it, you can watch the replay of the first webinar, on patient-centered medical homes, here. The second webinar with the American Academy of Home Care Medicine will be on July 8th at 3pm ET. We'll be talking about how family caregivers fit within the Independence-at-Home model of care.
Finally, the Advisory Committee of the 2014 Caregiving in the U.S. research report has convened. Working with AARP, we're looking forward to another tremendous report that will move the caregiving field forward.
Thank you for your continued support of our work and the work you do to support family caregivers.
Kind regards,
Gail
Gail
Gail Gibson Hunt
President and Chief Executive Officer
In This Issue
From the President's Desk
News from the Alliance
Research, Reports & Publications
Legislation & Advocacy
Member Spotlight
State & Local Coalitions
Upcoming Events
News from the Alliance
On June 4th, the Alliance convened the Second Annual meeting of the International Alliance of Carer Organizations (IACO). IACO's mission is to to increase visibility of family caregiving across the lifespan as an international issue; promote sharing of best practices between countries; and to encourage and provide assistance to countries interested in developing family carer organizations. For more information, please visit http://www.caregiving.org/advocacy/international.
The Alliance is excited to welcome three new member organizations in recent months: the Social Security Administration, Forest Laboratories, and home care company Right at Home. Ben Belton, Senior Advisor to the Acting Commissioner of Social Security, is also representing SSA as an ex officio member of the Alliance's Board of Directors.
Alliance President/CEO Gail Gibson Hunt was honored to present at the June 23rd White House Summit on Working Families on the caregiving panel. The event included remarks from the President, Vice President, First Lady and Second Lady on improving work-life balance for families in America. More information at http://workingfamiliessummit.org/.
In case you missed it, the Alliance hosted the first webinar in its Members Only Summer Webinar Series. The webinar featured speakers from the Patient-Centered Medical Home. Catch the replay here.
The Heterogeneity in Financial and Time Burden of Caregiving to Children with Chronic Conditions
Hua Zan, Robert L. Scharff
Abstract
We examine the financial and time burdens associated with caring for children with chronic conditions, focusing on disparities across types of conditions. Using linked data from the 2003 to 2006 National Health Interview Survey and 2004–2008 Medical Expenditure Panel Survey, we created measures of financial burden (out-of-pocket healthcare costs, the ratio of out-of-pocket healthcare costs to family income, healthcare costs paid by insurance, and total healthcare costs) and time burden (missed school time due to illness or injury and the number of doctor visits) associated with 14 groups of children’s chronic conditions. We used the two-part model to assess the effect of condition on financial burden and finite mixture/latent class model to analyze the time burden of caregiving. Controlling for the influences of other socio-demographic characteristics on caregiving burden, children with chronic conditions have higher financial and time burdens relative to caregiving burdens for healthy children. Levels of financial burden and burden sharing between families and insurance system also vary by type of condition. For example, children with pervasive developmental disorder or heart disease have a relatively low financial burden for families, while imposing a high cost on the insurance system. In contrast, vision difficulties are associated with a high financial burden for families relative to the costs borne by others. With respect to time burden, conditions such as cerebral palsy and heart disease impose a low time burden, while conditions such as pervasive developmental disorder are associated with a high time burden. This study demonstrates that differences exist in caregiving burden for children by type of chronic condition. Each condition has a unique profile of time and financial cost burden for families and the insurance system. These results have implications for policymakers and for families’ savings and employment decisions.
New Research, Reports & Publications
AARP released the Long-Term Services and Supports Scorecard, featuring information on the fifty states (including caregiving). For the report, please visit http://www.longtermscorecard.org/.
The RAND Corporation, in partnership with the Elizabeth Dole Foundation, released a comprehensive study on America's Military Caregivers. Read the report here.
RAND also released a new report on Improving Dementia Long-Term Care. Read it here.
http://www.rand.org/health/projects/military-caregivers.html
The RAND Military Caregivers Study
The RAND Military Caregivers Study focuses on the caregivers of wounded, ill, and injured military servicemembers and veterans. Funded by the Elizabeth Dole Foundation, the study aims to quantify military caregivers' needs and examine existing policies and programs for meeting them.
Who Are Military Caregivers?
A military caregiver is a family member, friend, or acquaintance who provides a broad range of care and assistance for, or manages the care of, a current or former military servicemember with a disabling physical or mental injury or illness.
Although significant attention has been paid to servicemembers and veterans with service-related injuries and associated conditions, little is known about the needs of their caregivers or the resources that exist to meet them.
What's New
Featured Reportsoldier welcomed home from Afghanistan, photo by Capt. Charlie Dietz/U.S. Army
Hidden Heroes: America's Military Caregivers
Mar 31, 2014
There are 5.5 million military caregivers across the United States, with nearly 20 percent caring for someone who served since the terrorist attacks of Sept. 11, 2001. Military caregivers experience more health problems, face greater strains in family relationships, and have more workplace issues than noncaregivers. Changes are needed to both provide assistance to caregivers and to help them make plans for the future.
Related Resources
Key Facts and Statistics from the RAND Military Caregivers Study
This presentation slide deck offers key facts and statistics from the RAND Military Caregivers Study.
Supporting Military Caregivers: Options for Congress
Presents options Congress might take to support military caregivers based on RAND's sweeping study of this population and their support environment.
Military Caregivers in the Workplace
Presents findings from RAND's sweeping study of military caregivers on the effect of military caregiving on employment and the workplace.
Supporting Military Caregivers: The Role of Health Providers
Examines how health care providers can best support military caregivers based on RAND's sweeping study of this population and their support environment.
More Publications »
From the RAND Blog
military homecoming
Ask Me Anything: Rajeev Ramchand on Military CaregiversJun 24, 2014
With military caregivers quickly becoming a topic of national discussion, RAND's Rajeev Ramchand hosted an "Ask Me Anything" session on Reddit last week, fielding a variety of questions about military caregivers and other issues concerning mental health and the U.S. military.
The National Institute on Aging released a guidebook on Home Safety for People with Alzheimer's Disease, available here.
http://www.nia.nih.gov/sites/default/files/home_safety_for_people_with_alzheimers_disease_2.pdf
An article in the June issue of Maternal and Health Journal examined the financial and time burden of caring for children with chronic conditions. Researchers found a correlation in caregiving burden based on the child's chronic conditions. Read more here.
Washington State University released a literature review on the self-care needs of family caregivers with deprgession. Read more here.
Self-Care Needs of Family Caregivers of Depression: Management and Prevention of Caregiver Burnout
Palmer, Mary Ann
URI: http://hdl.handle.net/2376/5011
Date: 2014-06-19
Keyword:
Caregiver burden, bipolar, depression
Abstract:
Depression is one of the common mental disorders, affecting 6.6% of adult Americans yearly, yet over 80% are not treated (Center of Disease Control & Prevention [CDC], 2010). Related to depression, about 30,000 Americans commit suicide each year, and about 500,000 make suicide attempts that warrant emergency care (CDC, 2010; Nicholas & Golden 2001). Depression varies in severity and demography, and presents a significant health concern not only in America but throughout the world. The onset is gradual, episodic in nature, and clinically manifest at adulthood. Depressed persons are usually cared for by family members at home (National Institute of Mental Health [NIMH], 2008). Therefore, supporting family caregivers is crucial for the survival and recovery of this group of patients. Family caregivers are at risk of developing behavioral and health problems due to the burden of caregiving (Highet et al., 2005). Understanding the circumstances that influence caregiver’s ability to care for depressed members will provide perspectives on treating depression, improve the caregivers' quality of life, prevent delay in treatment, and minimize the frequent relapses among depressed persons (Wijngaarden et al., 2009). This paper reviews the current literature on physical, psychological, and social stressors that challenge the caregiver's ability to provide care to a family member with depression and presents the current evidence on prevention and management of caregiver burnout.
Description:
“A project submitted in partial fulfillment of the requirements for the degree of Master of Nursing, Washington State University College of Nursing, May 2014."
Legislation & Advocacy Update
Josh Phoebus, Legislative Consultant, National Alliance for Caregiving
Federal Developments
Beginning in January 2015, in 29 states, home care workers will be eligible for the federal minimum wage. Previously, Medicaid paid agencies, which then paid the home care workers with little oversight. The new executive order, which came out in April, will offer federal minimum wage, overtime, and travel time. The Department of Labor estimates it will cost $6.8M over 10 years and it's unclear what the total cost will be.
Executive Branch Developments
The US Department of Health and Human Services announced on May 13, 2014 that their Medicare Fraud Strike Force had charged 90 individuals over seven states with Medicare fraud for their participation in schemes that led to approximately $260 million in false billings. This is the seventh Strike Force operation since its inception in March 2007. Over the past seven years, the Strike Force has charged almost 1,900 individuals with Medicare fraud leading to approximately $6 billion in false billings. To learn more about the Medicare Fraud Strike Force, please visit www.stopmedicarefraud.gov
State Legislative Developments
The Oklahoma legislature passed significant caregiving-related legislation when the Governor's office signed it into law on May 12th. S.B. 1536, also known as the "C.A.R.E. Act", permits hospital patients to designate a family caregiver upon their admission. In return, the hospital is legally required to notify the designated caregiver that the patient has been discharged and consult with them during the aftercare period.
The Massachusetts legislature is currently considering Senate Bill 987 which would permit spouses to serve as paid caregivers. The legislation was referred from the Committee on Public Health to adjoin a companion study order, S.B. 2114, on April 28, 2014, before being advanced to the Committee on Senate Ethics and Rules on May 1, 2014. The MassHealth Personal Care Attendant Program (MHPCP) spent $470 million in 2013 to compensate approximately 30,000 personal care attendants at a rate of $13 per hour. The current program allows family members, but not spouses, to receive financial support for caregiving. Supporters of the legislation point to study findings that found a high level of care provided by spouses in states where they are paid while opponents of the legislation argue that there is a cultural expectation that spouses take care of each other "in sickness and health." They are also concerned about Massachusetts' possible future liability for claims made by spouses for care provided to spouses prior to this legislation's possible passage.
Member Spotlight: Intel-GE Care Innovations & the "Caregiver Connect" ProgramAs a member of the National Alliance for Caregiving and our Board of Directors, Intel-GE Care Innovations is looking for new ways to connect family caregivers and their loved ones to a health care industry increasingly reliant on new technologies. A joint venture between Intel and GE, Care Innovations works to bring new healthcare technologies and solutions into the home that can improve the health of patients and their families. Care Innovations also collects, aggregates, and analyzes data from a variety of in-home sensors and devices in order to develop best practices and better connect patients to the care continuum.
We sat down with Karissa Price, PhD, the Chief Marketing Officer of Care Innovations, to talk about the new technologies that are becoming available to support caregivers. Dr. Price describes the Caregiver Connect tool, a family caregiver portal which helps family caregivers manage their loved one's care. Click here to read more!
National Alliance for Caregiving
Advancing Family Caregiving through Research, Innovation & Advocacy
Member Spotlight: Intel-GE Care Innovations
June/July 2014 – Caregiving Exchange Newsletter
As a member of the National Alliance for Caregiving and our Board of Directors, Intel-GE Care
Innovations is looking for new ways to connect family caregivers and their loved ones to a health care
industry increasingly reliant on new technologies. A joint venture between Intel and GE, Care
Innovations works to bring new healthcare technologies and solutions into the home that can improve
the health of patients and their families. Care Innovations also collects, aggregates, and analyzes data
from a variety of sensors and devices in the home in order to develop best practices and better connect
patients to the care continuum.
We sat down with Karissa Price, PhD, the Chief Marketing Officer of Care Innovations, to talk about the
new technologies that are becoming available to support caregivers.
Tell me about how Care Innovations supports family caregivers.
We’ve brought together two technologies that support family caregivers and are working to improve
these tools for patients and families. GE brought us the QuietCare product, which is an in-home sensor
to monitor a patient’s movement in the home. If QuietCare notices any abnormal behavior (such as
Mom spending a very long time in the bathroom), it sends an alert to that patient’s team. The alert can
go to anyone who helps support the patient – a family caregiver, an assisted living nurse, or even a
doctor. What’s great about this technology is that it’s not a pendant or an alert code – it’s built into the
home as a private sensor that monitors the patient’s movement.
Intel brought the GUIDE monitoring system to the table. GUIDE is a dedicated device that can be used to
create health sessions with a patient or family. During the session, the patient has a daily virtual health
session where they are provided with dynamic educational content around their condition and are
asked to enter their vital information (such as blood pressure or weight). The information is transmitted
securely to their clinician who can take the appropriate action based on the answers and data from the
health session.
In addition to the technologies we started with, Care Innovations has developed a tool kit specifically
targeted at Family Caregivers call Connect Caregiver. This new solution is the first effort to connect the
family caregiver with the patient and professional caregiver, all in one system.
Tell me more about Caregiver Connect – how does it support family caregivers?
Think of Connect Caregiver as a family caregiver portal, like a “Facebook” for caregivers. Caregivers can
create a private account and enter information on their loved one. It’s an organizational tool to help
monitor when a patient has appointments, what medications they are taking and to track their health in
general. In addition, we have content and programs just for the family caregiver to help them manage
their own stress and health. A healthy caregiver makes for a happier and healthier patient in our world
view.
How do programs like Connect Caregiver improve health for care recipients?
These types of tools function as part of a chronic disease management program. They can be used to
support any patient, regardless of the disease they manage - diabetes, chronic heart failure, chronic
obstructive pulmonary disease. Program must be HIPAA compliant, which means that the patient has to
designate the caregiver before the caregiver can view their online data.
We believe that remote care management tools must be connected to how patients and caregivers
actually live – that they can access what they need on a tablet, computer, or smartphone. The real vision
here is to meet the patient and the family caregiver wherever they are. We want a program that will
work for them and make their lives easier.
Is there a cost for family caregivers to use this technology?
Not for family caregivers - the program is free. You enroll and use the tool, which is now available at
http://www.ciconnect.com. From a payer perspective, insurance companies who are interested in
managing patient populations have been including tools like Connect Caregiver in their plans. We also
have six different clients who are using the GUIDE product to help.
It seems like in the age of the iPhone, there are hundreds of competing telehealth apps and websites.
What would you say to innovators working in this space?
Technology can solve problems, but it has to be really simple to use. It can’t require reading a manual.
Part of our thinking is about how we can design solutions to meet the patient and family caregiver
where they are. The real crux of it for us is can we create true solutions that engage the patient and
family caregiver in ways that they will change their behavior in order to improve or maintain the health
of the patient.
Are there other benefits to in-home technologies?
Yes – tools like the GUIDE and Connect Caregiver can help create aggregate data on family caregivers
and patients that can be used to create greater insights on what works to improve patient health. We
have 6.8 billion data points on consumers at home that we are using to understand what programs work
and which ones don’t. That’s the direction we’ll continue to go in, looking for ways to make healthcare
more efficient, and how we can help create better health outcomes for everyone. The algorithms are
getting smarter all the time.
Many thanks to Dr. Price and Intel-GE Care Innovations. If you’re part of a member company of the
Alliance and would like to be profiled in an upcoming newsletter, please contact our Director of
Communications and Coalitions, C. Grace Whiting, at gracewhiting@caregiving.org.
Caregiving Coalitions Corner
Do you know a Caregiving Champion? The Caregiving Champion program will highlight persons of influence who have worked to bring family caregiving to the forefront of the discussion in their cities, states, or the nation. The Alliance is now accepting nominations for Champions. Champions will be displayed on the Alliance's new website, beginning in late July 2014.
A Caregiving Champion is someone who has supported family caregivers by raising public awareness, implementing public policy solutions, or educating others on the challenges facing caregivers. For example, a Champion might be a local lawmaker or policymaker, a public supporter of caregiving (such as a Governor's spouse), the CEO of a company that supports a caregiver-friendly workplace, a local city councilperson, or an academic.
To nominate a Champion, please view the Caregiving Champion criteria here and email your suggestions to gracewhiting@caregiving.org.
Coalition Updates
The Florida Department of Elder Affairs's Purple Ribbon Task Force is surveying family caregivers caring for person with Alzheimer's disease or dementia. To assist in distributing the survey to your coalition members or to take the survey yourself, please email gracewhiting@caregiving.org.
New Jersey is planning to launch two new coalitions, one in Mercer County and one in Hudson County. Caregivers of New Jersey continues to offer support to these growing coalitions, including its recent Caregiver Awareness Day in southern Ocean County. Learn more at http://njcaregivers.org/.
Rosemary Rawlings, the author of Learning by Accident, will present to the Virginia Caregiving Coalition on July 17th. Ms. Rawlings became a caregiver suddenly after her husband suffered a brain injury in a biking accident. Learn more here.
The Virginia Caregiver Coalition and the Metropolitan Caregiver Service Collaborative of Minnesota are working with local AARP chapters on the legislative C.A.R.E. Act, which would provide additional support to family caregivers at the hospital discharge of a loved one. Learn more about the act by clicking here.
United Way of Northern New Jersey is partnering with Sanofi US and the Sanofi Foundation for North America to create a caregiver-friendly workplace environment. United Way and Sanofi US held a Caregiver Summit in early May to help raise awareness and establish a resource group for caregivers. Learn more here.
Upcoming Events in Caregiving & Aging
Answers on Aging: The 39th Annual n4a Conference
July 12 - 16, 2014, Dallas, Texas
Join n4a in Dallas, Texas for its 39th Annual Conference & Tradeshow to see the most innovative policies, programs and services that assist older adults, persons with disabilities and their caregivers lead independent and productive lives showcased. To learn more or register, please click here.
National Home and Community-Based Services (HCBS) Conference
September 13 - 28, 2014, Washington, DC
For thirty years, the nation's long-term services and supports system has been in the midst of an historic shift from institutional care to individualized home and community services for older adults and people with disabilities. Today changes continue and waiver programs and services are changing too. Learn more and register here.
Get in Tune with Respite:
16th Annual National Lifespan Respite Conference
October 7 - 9, 2014, Nashville, Tennessee
The ARCH National Respite Network, in collaboration with the TN Respite Coalition, will host the 2014 National Lifespan Respite Conference in Nashville, TN on October 7-9, 2014 at the Nashville Marriott at Vanderbilt University. Visit http://www.arch.memberlodge.org/2014Conference.
If you would like the Alliance's President and CEO, Gail Gibson Hunt, to present on caregiving issues at your upcoming conference, please email stephanie@caregiving.org.
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