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News from the Alliance
The Alliance is pleased to announce the upcoming event, Technology to Support Family Caregiving, which will be held on May 14th in the Rayburn Building B-339. This event will be 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 will be two different panels, a nonprofit/academic panel and a for-profit technologies panel. The event is sponsored by Continua, IgeaCare, and AGIS. For more information about this event, contact Suzanne Stack at the Alliance: . For those who will not be able to attend the event, we will have a summary in the June newsletter.
Our Legislative Updates section features important federal and state legislation related to issues of Caregiving. This issue also contains international news with a report on New Zealand’s recently adopted Carers’ Strategy, a five-year action plan to address the issues facing New Zealand’s 420,000+ caregivers. There is also a summary of Senator Hilary Clinton’s recently introduced 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 Reports and Publications Section has information and links to two essential publications. The first is from the Alzheimer’s Foundation of America (AFA) ICAN: Investigating Caregivers’ Attitudes and Needs. The report, released in March 2008, reflects what many families already know, that caregiving is a family affair. Children under 21 are actively engaged in some form of caregiving for a loved one with Alzheimer’s disease. The second publication looks at The Institute of Medicine's (IOM) recommendations for improving and expanding the health care workforce in their report, "Retooling for an Aging America: Building the Healthcare Workforce”. Dr. John Rowe used the report in his recent testimony before the U.S. Senate’s Special Committee on Aging.
We have added a new section to our monthly newsletter, Advocacy 101. This month in Part 2, we review key stakeholders in advocacy including governmental organizations, media and coalition and community partners. Please feel free to contribute to this section either by contribution of articles or through topic suggestions.
Gail Gibson Hunt
CEO and President
National Alliance for Caregiving
Legislative Updates
International News/Legislation
On Monday, April 28, the New Zealand Government launched a new strategy for New Zealand’s 420,000+ caregivers. The Carers’ Strategy’s provides for a five-year action plan, which will include the review of financial and respite supports for families, among other things. It will also deliver practical help and celebrate the role of caregiving. The Strategy Action Plan is the first of future action plans to ensure an ongoing focus on carers. The New Zealand Carers Alliance partnered with the Government during the strategy consultation period. Meetings were convened around the country to solicit feedback on the strategy and develop the action plan. The New Zealand Carers Alliance is a coalition of 47 national non-profits supporting families with health and disability needs. For more information about the Carers’ Strategy, contact John Forman:
Federal Legislation
On April 28, 2008, Senator Hilary Clinton introduced S. 2921, 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.
On April 16, 2008, the Senate Special Committee on Aging held a hearing entitled Caring for Our Seniors: How Can We Support Those on the Frontlines? Chairman Herb Kohl (D-WI) stated that by the year 2020, the number of older adults in need of care will increase by one-third while the number of trained people to care for these older adults is in critical shortage. Witnesses included Robyn Stone of AAHSA’s Institute for the Future of Aging Services, Todd Semla of the American Geriatrics Society, and Martha Stewart. Sen. Kohl is expected to introduce legislation on the issue shortly. A webcast of the hearing will be posted on the committee webpage: http://www.aging.senate.gov. You can also read Martha Stewart’s testimony on her blog: http://blogs1.marthastewart.com/martha/2008/04/senat-draft-pos.html.
Traumatic Brain Injury Legislation Reauthorization
On April 28, the President signed the Traumatic Brain Injury Act Reauthorization, which became Public Law 110-206. The law extends and improves funding for a range of traumatic brain injury rehabilitation programs, such as assistance in returning to work, finding a place to live, obtaining needed support and appropriate rehabilitative services. The law also helps soldiers with brain injuries from combat and children, who tend to have a higher incidence of brain injuries. The law also funds a CDC program to assist in preventing such injuries.
State Legislation
Illinois
The Illinois Senate on April 17, 2008 unanimously approved SB 2112, a plan to create a “spousal caregiver” demonstration project that would provide information about how much it would cost the state to let full-time spousal caregivers receive Medicaid payments. In Illinois and most other states, full-time spousal caregivers cannot receive Medicaid.
California
Gov. Arnold Schwarzenegger is proposing 10 percent cuts to many state programs to deal with a looming $16.5 billion state budget deficit. The cuts are likely to cause many adult day service clients — who are currently living in their own homes — to be transferred to a nursing facility, as many of those rely on Medi-Cal funding. Proposed cuts would affect caregivers’ ability to work outside of the home and the quality of life for both caregivers and adult day service clients.
Hawaii
Lawmakers in Hawaii are considering a number of bills that impact seniors and their caregivers. SB2830 and HB2196 would require a joint legislative committee on family caregiving to be renamed the committee on Aging in Place. These two bills expand the concept that seniors stay in their homes as long as they want and include cash and counseling as a component. Cash and counseling is an innovative idea which was originally implemented as demonstration projects in New Jersey, Arkansas and Florida in1998. It was then expanded to twelve additional states. The federal government has made it significantly easier for states to have cash and counseling programs. As of January 2007, “waivers” are no longer required for eligible Medicaid consumers for purchasing the disability and support services they want. The 2006 reauthorization of the Older Americans Act (OAA) has made possible inclusion of cash and counseling in OAA funded services.
Coalition News
Maryland
The Baltimore City Commission on Aging & Retirement Education held a Caregiver’s Conference for Family Caregivers of Older Adults on January 26, 2008. The keynote speaker was Sylvia Mackey, wife of NFL legend John Mackey. Two hundred family caregivers enjoyed breakfast, lunch speakers, and prizes as well as exhibits and resources by service providers. Topics included “Alzheimer’s Journey from Denial to Acceptance”, “Humor as a Caregiving Tool”, A Caregiver’s Personal Journey and “Problem Solving through Mediation”. The upcoming Second Annual Family Caregivers and Grandparents’ Information Fair will be held on June 7, 2008, and will be an opportunity for many caregivers to receive information from more than 40 city vendors from mental health, human services, respite services, financial services, social services, assisted living and much more. For more information call: 410-396-1337.
New Jersey
On November 14, 2007, nearly 180 people attended a Caregiver Recognition Luncheon sponsored by the Caregivers Coalition of Morris County. The goal of the Luncheon was to honor the work of caregivers and to raise public awareness of caregiving issues. A highlight of the event was the presence of former Governor Richard J. Codey as the keynote speaker. The Morris County Freeholders proclaimed November Caregiver Awareness Month in Morris County. The Daily Record, Morris County’s newspaper, ran a front-page story on the event. Cablevision produced a television show on the event using clips from the DVD developed by the coalition interspersed with clips of the events participants and interviews with Governor Codey, Eric Joice of the New Jersey Lifespan Respite Coalition and members of the Caregivers Coalition of Morris County Steering Committee.
Arizona
On March 13, 2008 "BECAUSE WE CARE!" Rang Out as the Rally Cry on the Capitol lawn. Hundreds joined in as Arizona celebrated caregivers throughout Arizona. The Rally helped create public awareness of the immense importance of informal, unpaid caregivers to our public health care system. The goals of the rally were toeducate about the new Lifespan Respite Care Program in Arizona; to hear testimonies from other caregivers; to educate about the new Arizona Caregiver Coalition; to provide information through a Caregiver Resource Fair with free Caregiver Toolkits; to provide information on the PBS film, "Caring for Your Parents"; and to disseminate information about services and assistance available to support caregivers. There were also prizes and gift bags.
Network Advocacy Committee
The newly formed Network Advocacy Committee is beginning its work to track both Federal and State legislation. High on our priority list is the funding of the Lifespan Respite Care Act, the Safety of Seniors Act of 2007 and the Traumatic Brain Injury Act. For information on how to participate in the Network Advocacy Committee or for more information on this legislation, contact Carol Allenza:
Reports and Publications
ICAN: Investigating Caregivers’ Attitudes and Needs
Results from the third annual Alzheimer’s Foundation of America (AFA) survey suggest that Alzheimer’s disease care is a family affair. Most “sandwich caregivers” – the parents or guardians of children under 21 who also care for an aging parent, other relative or friend with Alzheimer’s disease – say their children are assisting with caregiving responsibilities that range from attending doctors’ appointments to feeding and dressing their loved ones. Survey results found that about three in five caregivers say their children aged 8 to 21 are involved in caring for a loved one with Alzheimer’s disease. Of the caregivers who feel they do a good job balancing the care of their loved ones with Alzheimer’s disease and children under 21, more than one-third (36%) specifically cited support from children as a contributor to their success. For more information, visit: http://www.alzfdn.org/MediaCenter/260308.html
Retooling for an Aging America: Building the Healthcare Workforce
The Institute of Medicine's (IOM) released recommendations for improving and expanding the skills and preparedness of the health care workforce in their report, "Retooling for an Aging America: Building the Healthcare Workforce”. Dr. John Rowe, Chairman of the IOM's Committee on the Future Health Care Workforce for Older Americans, testified before the U.S. Senate Special Committee on Aging and focused his testimony on the report's recommendations. The 226-page document made recommendations for improving training and retention of skilled professional health care workers as well as set forth a vision of care for older adults based on model practices. For more information, visit: http://books.nap.edu/openbook.php?record_id=12089&page=R1
Resources/Events/Opportunities
The Alzheimer’s Association has announced the availability of a free football style "playbook" about caregiving by Frank Broyles, former Athletic Director of the University of Arkansas Razorbacks. The Playbook is a how-to guide, written for those who care for someone with Alzheimer's. Coach Broyles cared for his late wife Barbara, who had Alzheimer's disease. To learn more, visit: http://www.alz.org/living_with_alzheimers_coach_broyles_playbook.asp
The Brain Injury Association of America (BIAA) will host the 2008 National Brain Injury Caregivers’ Conference June 6-8, 2008 at the Westin Dallas Fort Worth Airport Hotel in Dallas, TX. The keynote speaker is Lee Woodruff, whose husband Bob Woodruff, ABC news journalist was injured in Iraq. Scheduled are over 25 experts presenting on all aspects of brain injury and caregiving at this vital education and networking opportunity. Visit http://www.biausa.org/livingwithbi.htm for more information and to register.
On May 7, 2008, more than one thousand grandparents and other relatives gathered at the U.S. Capitol for the Third National GrandRally for Grandparents and Other Relatives Raising Children to expand public awareness of the important role they are playing for children who have become temporarily or permanently parentless. The GrandRally is a call for help to families, friends, community groups, state and national organizations, government agencies and elected officials. The cosponsors of the GrandRally are the Children's Defense Fund, AARP, the Child Welfare League of America, Generations United, GrandFamilies of America, and the National Committee of Grandparents for Children's Rights. One thousand grandparents and other relatives from 41 states rallied in Washington in 2005. For more information visit: www.grandrally.org.
Advocacy 101—Part 2
In April we began Advocacy 101 by discussing 10 ways to begin your advocacy. This month the focus is understanding and effectively communicating with key stakeholders—government officials, media, advocates and volunteers.
Legislative Branch
· Writes laws, amends existing laws and approves funding
· Focus is on the principle of “Representation” – elected officials care about the people who elect them
· The goal will be to demonstrate the presence of an impact within the legislative district
· Can be municipal, county or state level
Next Steps!
· Know the structure / process (but you don’t need to be an expert)!
· Communicate the district connection
· Know what the elected officials care about
· Know who the key players are
· Recognize your position in the process
Executive Branch