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News from the Alliance
The Alliance held an event, Technology to Support Family Caregiving, on May 14th on Capitol Hill. The event was co-hosted by Rep. Earl Pomeroy (D-ND), co-chair of the Long Term Care Caucus and Rep. Patrick Kennedy (D-RI), co-chair of the 21st Century Healthcare Caucus. There were two different panels, a nonprofit/academic panel and a for-profit technologies panel. The event was sponsored by Continua, IgeaCare, and AGIS. For a summary of the event, please see our Events Section.
Our Legislative Updates Section features important federal and state legislation related to issues of Caregiving. There is an update on Lifespan Respite funding, and information on two newly proposed bills: The Family Fairness Act, to expand the Family and Medical Leave Act (FMLA) and Caring for Wounded Warriors Act, legislation to authorize pilot programs on training and certification for family caregiver personal attendants of veterans and members of the Armed Forces with traumatic brain injury. This issue also contains international news with a report on Australia’s recent legislative committee inquiry on better support for family caregivers.
The Reports and Publications Section has information and links to two interesting publications. The first is the American Occupational Therapy Association Societal Statement on Caregiving, which emphasizes the need for supporting caregiver well being. The second is a publication that looks at the plight of people caring for their elderly and infirm family members in 23 European countries in EUROFAMCARE’s Trans-European Survey Report.
The Resources/Events/Opportunities Section includes information on a new Fire Safety Guide for Seniors and Caregivers, produced by the FDNY. It also provides information on two upcoming events: a Center for Medicare and Medicaid Services (CMS) satellite broadcast on the Health Implications of Caregiving and the 2008 Lifespan Respite Conference in Des Moines, Iowa.
Gail Gibson Hunt
CEO and President
National Alliance for Caregiving
Legislative Updates
International News/Legislation:
Australia
On Wednesday May 14, 2008 the Minister for Families, Housing, Community Services and Indigenous Affairs, The Hon Jenny Macklin MP, asked the House Standing Committee on Family, Community, Housing and Youth to inquire into and report on better support for carers. To obtain an improved understanding of the challenges facing caregivers (carers in Australia) and their support needs, the committee will inquire into and report on:
§ role and contribution of caregivers in society and how this should be recognized;
§ barriers to social and economic participation for caregivers, with a particular focus on helping caregivers to find and/or retain employment;
§ practical measures required to better support caregivers, including key priorities for action; and
§ strategies to assist caregivers to access the same range of opportunities and choices as the wider community, including strategies to increase the capacity for caregivers to make choices within their caring roles, transition into and out of caring, and effectively plan for the future.
For more information on the issue of family caregiving in Australia go to: http://www.carersaustralia.com.au/
Federal Legislation:
On June 5, 2008, the Senate passed the FY09 Budget Conference Agreement and the House is expected to do the same. The compromised budget agreement is expected to include at least $26 million for Lifespan Respite. Appropriations Committees will make a final decision before the bill goes to the floor. Since the budget resolution is nonbonding, advocates are still requesting the fully authorized amount of $53.3 million. Senator Hillary Clinton (D-NY) and Senator John Warner (R-VA) have sent around a Dear Colleague asking for Senators to sign a letter to Chairman Senator Tom Harkin (D-IA) and Ranking Member Senator Arlen Specter (R-PA) of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies urging full funding in the amount of $53.3 million for Lifespan Respite in FY09.
May 11, 2008, Rep. Tammy Baldwin (D-WI) introduced HR 5364, Family Fairness Act, to expand the Family Medical Leave Act (FMLA) to cover all part-time workers, many of whom are currently excluded from the protections provided by the FMLA. The bill amends the FMLA to eliminate the requirement that employees work 1,250 hours in the year immediately preceding their leave to be eligible to take FMLA leave. The bill does not alter the requirement that employees must work for their employer for at least one year, nor does it alter any other requirements or definitions of the law.
The Family Fairness Act is particularly important for working women, since the vast majority of part-time workers—over two-thirds—are women. Many working women have significant caregiving responsibilities for children or other family members. But many do not have access to the basic job protection provided by the FMLA because they cannot meet the threshold hour requirement for eligibility.
On April 28, 2008, Senator Hilary Clinton introduced S. 2921, Caring for Wounded Warriors Act of 2008, legislation to authorize pilot programs on training and certification for family caregiver personal care attendants for veterans and members of the Armed Forces with traumatic brain injury. The legislation includes, among other things, a provision to allow compensation for a family caregiver who receives certification as a personal care attendant for care provided to a veteran or Armed Forces member. S 2921 will be recognized by the Veterans Affairs Committee on May 21st at a legislative hearing and then considered in early June. The National Alliance for Caregiving joined several other organizations in endorsing this legislation.
To view the full text of any of the federal legislation listed above, go to: www.congress.gov
State Legislation:
Massachusetts
Legislation entitling all employees in Massachusetts up to seven paid sick days is on its way to the Senate with a favorable committee recommendation and in spite of opposition from major employer groups. S. 1073, An Act Establishing Paid Sick Days, sponsored by Sens. Patricia Jehlen (D-Somerville) and Steven Tolman (D-Brighton) is aimed at helping workers who have no such benefits and lose out on income any time they become ill or are forced to care for an ill family member. According to the bill, which received the endorsement of the Committee on Labor and Workforce Development, employees may use sick days for an illness or injury that requires them to stay home or seek professional medical care, to attend routine medical appointments, and for absences taken by domestic violence victims. The paid sick days may be used by employees for themselves or to care for their child, spouse, parent, or the parent of a spouse, according to a summary of the bill, which has been pushed by the advocacy groups ACORN and Greater Boston Legal Services.
Supporters of the bill say 41 percent of workers in Massachusetts, or nearly 1.3 million workers, lack a single guaranteed paid sick day. Opponents of the bill include the local chapter of the National Federation of Independent Business, the Massachusetts Restaurant Association and Associated Industries of Massachusetts. When the bill was heard last November, Bill Vernon, state director for the National Federation of Independent Business, said the financial burden of paid sick time mandates - on top of new health care coverage requirements - is too great for small businesses to bear.
S. 1073 was reported favorably out of committee on June 5, and referred to Senate Ways and Means. For more information on the legislation, visit the General Court of the Commonwealth of Massachusetts website: http://www.mass.gov/legis/
Hawaii
In May 2008, lawmakers in Hawaii passed SB 2830, which extends the joint legislative committee on family caregiving and renames it to reflect the expansion of the committee's authorization to address aging in place issues. This committee, the Joint Legislative Committee on Aging in Place, is responsible for developing the state's public policy on caregiving, and the legislature appropriated $500,000 for Kupuna Care Program (in home and community based care programs). The legislation also established a task force to focus on the needs and issues of grandparents raising grandchildren and requests the Executive Office on Aging to continue its respite inventory project in collaboration with the University of Hawaii.
For more information, visit the Hawaii State Legislature Website: http://www.capitol.hawaii.gov/
Coalition News
Hawaii
Hawaii Family Caregiver Coalition launched their 2007 Family Caregiver Awards Program in November 2007. The co-host was KHON2’s Elderhood Project. Awards were given on-air to the Alzheimer’s Association, St. Frances Hospice Bereavement Program and Kokua Council. A caregiver award was given to one family caregiver from each county. KHON2 also devoted air time to Coalition members’ interviews during the entire month. They are online at www.khon2.com/features/elderhood. The Coalition continues to work with KHON2’s Elderhood Project and KGMB9’s Genius of Aging Campaign to produce three public service announcements.
Virginia
Virginia Caregiver Coalition partnered with the Virginia Department for the Aging in 2007 to obtain a proclamation from the Governor for National Family Caregiver Month. They also received a proclamation from President Bush. The Coalition also partnered with Public Radio to publicize National Family Caregiver Month. The Coalition’s Caregiver Awareness Day activities included trainings via video conferencing throughout the state. Participants included the Virginia Department for the Aging, Newport News Health Department, Fairfax Health Department, Mountain Empire Older Citizens, Petersburg Health Department, Russell County Health Department, Fredericksburg Health Department, Marion Health Department and Washington County Health Department. The coalition’s advice was “Be inventive! Our use of video conferencing sites enabled us to have participation by caregivers from all over the state in the training event.”
Reports and Publications
American Occupational Therapy Association’s (AOTA) Societal Statement on Caregiving
Within the past year, the American Occupational Therapy Association (AOTA) has published a Societal Statement on caregiving, which emphasizes the need for supporting caregiver well-being. In addition, a number of resources have been developed over time to support the occupation of caregiving, most notably Tips for Living, which are available on the Consumer section of AOTA’s website (www.aota.org):
· Living With Alzheimer's Disease
· Understanding Autism
· Caring for the Adult's Caregiver
· Caring for the (Child's) Caregiver
· How Parents Can Avoid Parenting Time Traps
· Helping Your Loved Ones Preserve Independence in Later Years
· Keeping Older Drivers Safe on the Road
EUROFAMCARE Trans-European Survey Report
EUROFAMCARE is a group studying the plight of people caring for their elderly and infirm family members. In February 2006 EUROFAMCARE published a summary of their survey of 23 European countries. Among European carers, on average:
۰92% need help with domestic care services
۰89% need help with emotional, psychological and social needs, including respite
۰82% need help with mobility and transportation
۰79% need help with medications, medical treatment, rehabilitation and therapy
۰66% need help with their loved one’s physical/personal care needs (e.g. washing, dressing, eating or going to the toilet)
Other significant findings:
۰Carers spent an average 45.6 hours per week providing care
۰Only 4% of carers received government financial assistance, and 37% of the elderly they cared for got such assistance.
۰There were large cross-national variations in coverage, with 60% receiving assistance in socialist Denmark and only 2% in Greece. (At least some countries offer financial assistance.)
۰15% of working carers had reduced their work hours and had a decline in income. 5% of carers stopped working altogether.
To view the report in full: http://www.uke.uni-hamburg.de/extern/eurofamcare/publikationen.php
Resources/Events/Opportunities
On May 14, the Alliance hosted a successful half-day event on Technology to Support Family Caregiving. The event included two panels and fourteen speakers including co-hosts Representative Patrick Kennedy (D-RI) and Representative Tim Murphy (R-PA). The event was designed to bring attention to different technologies as well as the policy issues related to those technologies. Panelists talked about Personal Health Records, internet technologies for the caregiver and devices such as passive monitoring systems, which can collect data on the activities of the patient and report them back to the family caregiver. Panelists addressed challenges facing industry leaders, family caregivers and care recipients such as privacy issues, reimbursement, getting the word out about available technologies, technological capabilities and moving towards an integrated nationwide health information technology system.
Fire Safety for Seniors and Their Caregivers
The Fire Safety Education Fund supports the mission of the Fire Department through a variety of programs including The FDNY Fire Zone™, the Department’s hands-on, interactive multimedia fire safety learning center that teaches people how to be safe from fire at home and at school, mobile fire safety houses, Hot Dog –the fire safety dog—as well as many other programs that encourage fire safety among children and adults. Specifically they have prepared an easy to read, user-friendly booklet called Fire Safety for Seniors and their Caregivers:
http://www.fdnyfirezone.org/resources/#English
The Caregivers Marketplace
The Caregivers Marketplace is the nation’s first free program specifically designed to offer cash back on products not typically covered by insurance or Medicare. By working with leading manufacturers to negotiate cash back on carefully selected products and services that caregivers need to keep loved ones well cared for, healthy and most importantly, home. Products eligible for cash back include nutrition, digestive health, incontinence, bathing and skin care, and aids for daily living. They do not sell products.
www.caregiversmarketplace.com
UPCOMING EVENTS:
Health Implications of Caregiving
On Wednesday, June 25, 2008 at 1 p.m., The Centers for Medicare and Medicaid Services (CMS) is sponsoring a satellite broadcast to provide participants with information on how caregiving impacts the caregivers themselves. Presenters will include Kerry Weems, CMS and our own Gail Hunt. There will be a 30-minute question and answer session following the presentation. To register and for more information: http://www.blsmeetings.net/caregivers
Annual Lifespan Respite Conference September 4 - 6, 2008
The 2008 Lifespan Respite Conference, "Home Grown: Cultivating Caregivers," will be held in Des Moines, Iowa, September 4-6, 2008. The Conference is hosted by the Iowa Respite and Crisis Care Coalition in collaboration with the ARCH National Respite Network. To register, copy and paste this link: http://www.irccc.com/displaycommon.cfm?an=1&subarticlenbr=90
The Caregiving Exchange June 2008