|Volume III, Number 8|
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The National Kidney Foundation (NKF), a voluntary nonprofit health organization, is dedicated to preventing kidney and urinary tract diseases, improving the health and well-being of individuals and families affected by kidney disease and increasing the availability of all organs for transplantation. Headquartered in New York City but with local offices across the country, NKF is meeting the growing public health challenge of chronic kidney disease with a range of vital programs and services for the public, patients and healthcare professionals by providing public health education, early detection, research support, patient advocacy and organ donation.
NKF raises awareness about kidney health and the importance of early detection, and has awarded nearly $90 million in grants to over 1,000 scientists for research into the prevention and treatment of kidney disease and related conditions. NKF vigorously advocates for kidney patients, transplant recipients, living donors and donor families on key public policy and legislative issues on national and state levels. The Foundation recently launched a groundbreaking action plan to END THE WAIT! for a kidney transplant in the U.S. by standardizing best practices and eliminating barriers to donation across the country. Kelli Collins, Patient Services Director, responded to the following questions about the Foundation . . . [Read more]
Upcoming Events - 2012
April 20 (Deadline)
The Johnson & Johnson/Rosalynn Carter Institute Caregivers Program has announced a grant funding opportunity for non-profit community-based organizations implementing evidence-based caregiver support programs. An Initial Interest Form MUST be submitted electronically by April 20, 2012. Funding priorities are . . . [Read more]
The 2012 Alzheimer's Association Advocacy Forum will be held April 23-25 in Washington, DC. U.S. Health and Human Services Secretary Kathleen Sebelius, the featured luncheon speaker, will discuss the progress of the National Alzheimer's Plan. Leading political commentator and pollster, Frank Luntz, will be the keynote speaker. For more details and to register, visit the Alz.org website.
Caregiving.com provides free webinars to help family caregivers as well as professionals who work with them. This month's webinar, Listening for Your Answers, will help caregivers listen for the answers to the questions that can plague them: Am I doing what's right? Will I be okay? Will my care recipient be okay? It will be held the 25th at 12 noon ET (11 a.m. CT, 9 a.m. PT). Register at their website.
A caregiving household may contain supplies, equipment and medications. Medications can be lifesavers for a loved one but can also be dangerous if they are misused. To reduce the risk of prescription drug abuse, the U.S. Drug Enforcement Administration will sponsor its fourth National Prescription Drug Take-Back Day on April 28. . . . [Read more]
The American Academy of Home Care Physicians' two-day conference will explore key issues in clinical and practice management, present applicable emerging technologies and innovations in models and review clinical practice standards on May 3-4, 2012 in Seattle, WA. For details, visit their website.
The American Foundation for the Blind Leadership Conference, formerly the Josephine L. Taylor Leadership Institute, will be held this year in St. Petersburg Beach, FL. The AFB Leadership Conference seeks to improve the quality of programs and services to blind and visually impaired children and adults by providing a forum in which leadership personnel in education and rehabilitation can increase their awareness of student and client needs, expand their knowledge, refine leadership skills, and share concerns and strategies. Register at the AFB website.
The ARCH Webinar: Introduction to a Framework for Sustainability Planning for Lifespan Respite Grantees and their Partners will be held on Wednesday, May 30, 2012, 3:00 - 4:30 pm Eastern. The presenter will be Laura Martinez, Senior Program Associate, The Finance Project, Washington, DC. The goal of the webinar is to introduce . . . [Read more]
June 1 (Registration Deadline)
8th International Respite Conference - Registration Now Open. The 8th International Respite Conference will be held at the Le Meridien King Edward Hotel in Toronto, Ontario, Canada, October 10-12, 2012. ARCH is a member of the International Short Break Association, which is sponsoring the conference. ARCH serves on the conference planning committee and is supporting the effort. Early registration deadline is June 1, 2012. To register, visit the website at www.isba2012.net.
Join the National Alliance for Caregiving (NAC) on July 10 in Denver, CO for the 6th National Conference for Caregiving Coalitions, hosted by the National Alliance for Caregiving in conjunction with the Annual Conference of n4a
(the National Association of Area Agencies on Aging). To register, visit the N4A website.
The Alzheimer's Association International Conference will be held this year in Vancouver, British Columbia.The Alzheimer's Association International Conference (AAIC) is a forum for reporting and discussion of research and information on the cause, diagnosis, treatment and prevention of Alzheimer's disease and related disorders. To register, visit the Alz.org website.
Research & Practice
Family Caregiving in an Aging America - The New Normal
Family Caregiver Alliance has calculated about 43.5 million Americans care for someone age 50 and older than 50, making caring for an aging relative "the new normal," as CNN has reported. Family caregivers often provide levels of care that take incredible tolls on their health. Some healthcare professionals, policymakers, researchers and others are viewing this situation as a public health concern and have been discussed the challenges in recent articles, particularly as they relate to baby boomers. Articles for more information:
Recommended Changes to U.S.'s National Alzheimer's Plan
Over the next quarter-century the population of people 65 and older will double. As this happens, the number of people with Alzheimer's disease or other dementias will more than double because people 85 and older are the fastest-growing portion of America's aging population. In response to this fact, the National Alzheimer's Project Act was signed into law at the beginning of 2011. The act calls for . . . [Read more]
RCI Releases Recommendations to Avert Caregiving Crisis
As a follow-up to a 2012 position paper, "Averting the Caregiving Crisis: Why We Must Act Now," the Rosalynn Carter Institute for Caregiving (RCI) recently released an update with six strategic initiatives. To read more visit the Rosalyn Carter website.
SSA Anounces Compassionate Allowances Program Changes
The Social Security Administration (SSA) has expanded the list of "Compassionate Allowances" to provide fast-track disability decisions to Americans with the most seriously disabling medical conditions. Michael J. Astrue, Commissioner of Social Security, recently announced that 52 new Compassionate Allowances conditions would be added to the list. The new conditions primarily involve neurological disorders, cancers and rare diseases. . . . [Read more]
Study Results Released by NAC
The National Alliance for Caregiving (NAC) has released Best Practices in Workplace Eldercare. The study was conducted to identify current trends and innovations in workplace policies and practices to support employees with responsibilities for caring for older adults. It also examines key benefits to employers, including worker retention, improved productivity, lower stress and improved health among workers. Read more on best practices in eldercare. Download a "Best Practices in Workplace Eldercare" PDF from caregiving.org.
Innovations Clearinghouse on Family Caregiving
For additional research-based information and informed practices, visit FCA's Innovations Clearinghouse/Online Technical Assistance Center. Search the Clearinghouse to identify best practices, specific tools and policy & advocacy efforts; connect with fellow professionals from the aging networks; and request specialized technical assistance.
You can further shape the content of the Newsletter and the activities of the Technical Assistance Centers by telling us about your areas of interest. Please respond to
Lifespan Respite News
Getting to Know the Lifespan Respite Grantees and Stakeholders
The 30 Lifespan Respite Program grantees are moving forward with their proposed objectives. Twelve programs were funded in 2009, 12 in 2010, and 6 in 2011. The 2009 grantees are exploring means to continue their efforts beyond the 3 year funding cycle. Among the 30 funded states, seven received funding to expand their programs to include direct services. This month we will focus on Washington State, one of the 2010 grantees.
Lead Agencies and Primary Collaborators: The Aging and Disabilities Service Administration, a division of the Washington State Department of Social and Health Services, administers the Lifespan Respite Program grant. This work is done in collaboration with the Respite and Crisis Care Coalition of Washington (RCCCWA) and the Pierce County Aging and Disability Resource Center (ADRC) with the potential for expansion to additional ADRC sites. Other key collaborators are The Arc of King County, Girl Scouts of Western Washington, Washington State Child Care Resource and Referral Network (CCR&RN), and Catholic Community Services' Volunteer Chore Services (VCS). The project objectives are to build the capacity of the RCCCWA through new and existing partnerships; to provide information to caregivers to enable them to recruit, hire and work with respite providers; to collaborate on a statewide volunteer respite model for recruitment, training, support and retention of volunteer respite providers; and to develop outreach strategies to inform the public about the single point of entry for inquiries about respite care. The latter will include a website, brochure development and a toll free access number. Click on the following links for more about this program:
Main Activities . . .
State Respite Coalition Role . . .
Aging and Disability Resource Center (ADRC) Role . . .
Key Contacts . . .
Money Follows the Person: Funding for Home and Community-based Services
The Centers for Medicare and Medicaid Services, in their National Evaluation of Money Follows the Person being conducted by Mathematica Policy Research, released new data examining the costs and types of community-based services participants in the Money Follows the Person Program (MFP) received during the first year after the transition to community living. The MFP Demonstration supports state efforts to help Medicaid beneficiaries living in long-term care facilities transition back to the community. MFP participants are typically offered during their first year back in the community expanded home and community-based services (HCBS) and supports beyond those normally available to Medicaid enrollees to facilitate this transition.
. . . [Read more]
Community-Based Child Abuse and Neglect Prevention Programs and Lifespan Respite: What's the Connection?
ARCH has long been a proponent of respite and crisis respite as a necessary component of any strategy to prevent abuse or neglect. ARCH's work to help engage state agency partnerships through Lifespan Respite programs has been selected by the Office on Child Abuse and Neglect, U.S. Children's Bureau, as one of twelve strategic projects to strengthen families and prevent child abuse and neglect.
Colorado Respite Coalition Spearheads State Legislation for Respite
With state and federal funds for services such as respite in short supply, Easter Seals Colorado, a key partner in the Colorado Respite Care Project, has thought creatively about policy initiatives that might be politically palatable in these economically challenging times to help raise awareness about respite while raising state funds to support respite services. Easter Seals Colorado orchestrated the introduction of House Bill 1226 and the Colorado Respite Coalition has been advocating for it. The bill imposes a surcharge on persons convicted of crimes, including identify theft, against at-risk adults and at-risk juveniles. Monies from the surcharge fund, which will be administered by the State Unit on Aging and will be used to support respite programs and services for family caregivers of children, youth and adults with special needs across the State. . . . [Read more]
Still Time: Lifespan Respite Program Announcements from Administration on Aging (AoA)
It's not too late! The deadline for submission of all applications for the FY 2012 Lifespan Respite Care Program grants to states is 11:59 p.m., Eastern Time, on May 14, 2012. The Program Announcements are posted on AoA's web site (all announcements can be found at this link), and at theGrants.gov website.
The program announcements include . . . [Read more]
Give ARCH your Feedback
We Need Your Input! The AoA funded Lifespan Respite Training and Technical Assistance Project of the ARCH National Respite Network and Resource Center would greatly appreciate your input in planning its training and TA activities. Please take a moment to respond to our online questionnaire.
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This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration on Aging. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of Health and Human Services and endorsement by the Federal Government should not be assumed. ©2012 Family Caregiver Alliance. All rights reserved.
The National Center on Caregiving at Family Caregiver Alliance works to advance the development of high-quality and cost-effective policies and programs for caregivers in every state in the country. The National Center is a central source of information and technical assistance on family caregiving for policymakers, health and service providers, program developers, funders, media and families. For questions or further information about the National Center on Caregiving, visit the Family Caregiver Alliance website at www.caregiver.org.
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The Newsletter of the Technical Assistance Centers is a publication of the National Center on Caregiving at Family Caregiver Alliance, 785 Market Street, Suite 750, San Francisco, CA 94103.