Monday, July 9, 2018
Ivanka Trump's Paid Family Leave Plan Is Moving Forward
Bustle | July 3, 2018
"More than a year into Donald Trump's presidency, first daughter and senior advisor Ivanka Trump's plans to push paid family leave were still viewed as a nonstarter. Then on Monday, in a surprising shift, Congress announced a Senate committee hearing on Ivanka's paid family leave policy initiative."
Who Can Help Me With a Rare Disease?
U.S. News and World Report | July 2, 2018
"Patients with rare diseases often bounce from doctor to doctor...looking for answers. Global Genes, a rare disease advocacy nonprofit, reports that 'patients living with rare disease visit an average of 7.3 physicians before receiving an accurate diagnosis,' a process that takes an average of 4.8 years. Because so many rare diseases are progressive in nature, delaying diagnosis means a delay in treatment."
Finding a New Path With Dementia
Kiplinger | July 2, 2018
"As the first wave of baby boomers begins to be affected by dementia, perceptions of the disease are gradually beginning to change. Some with early symptoms are speaking out, hoping to counter dementia's stigma and pursue a higher quality of life. Advocates are pushing for more life-enhancing kinds of care, such as tools and resources for the recently diagnosed to make the best of their remaining strengths."
At 9 Years Old, She Was Her Mom's Primary Caregiver
U.S. News and World Report | July 1, 2018
"At the age of 9, Joi Stevens didn't have time for Barbies or sleepovers: she was the primary caregiver for her mother, Annie, who'd returned fully disabled from serving as an Army medic in Afghanistan...she completed a lot of homework assignments in hospital rooms while her mother recovered from knee and ankle surgeries."
Care for the Caregiver
University of Minnesota | June 28, 2018
"The University of Minnesota's Joseph Gaugler is at the forefront of growing concern about the psychological, economic, and physical toll...on caregivers. Gaugler, the Robert L. Kane Endowed Chair in Long-Term Care and Aging in the School of Public Health, leads a team of 10 that's generating scientific knowledge to help caregivers and, in turn, the people they care for."
Caregiving Policy Updates
Senate Appropriations Bill Includes Funding for Family Caregivers
Late last month, the Senate Appropriations Committee approved the fiscal year 2019 budgets for the Departments of Labor, Health and Human Services, Education, and Related Agencies. This bill includes funding for family caregivers including: $180,886,000 for the National Family Caregiver Support program, $300,000 to establish the Family Caregiving Advisory Council (per the RAISE Family Caregivers Act), and $9,556,000 to carry out the Native American Caregiver Support Program. Learn more about the Family Caregiver Policy Landscape HERE.
OIG Approves of Caregiver Support Services in Advisory Opinion
"On June 25, 2018, the Office of the Inspector General of the Department of Health and Human Services ("OIG") published Advisory Opinion 18-05, allowing a nonprofit medical center to provide or arrange for certain support services for individuals who care for adults with chronic medical conditions (the "Opinion"). The Opinion is significant because it helps to define the limits of recently enacted exceptions to the Civil Monetary Penalties Law. Learn more HERE.
Caregiving Research and Opportunities
Participants Needed for Study on Paid Leave and Disability
Columbia University and The Arc are doing a study on paid family and medical leave with people affected by disabilities. They would like to interview workers with disabilities and those who provide support to a friend or family member with a disability in California, New Jersey, New York, and North Carolina. They plan to conduct remote, one-on-one interviews by phone, web conference, or email. If you have worked in these states in the past 2 years, and have a disability or provide support to a friend or a family member with a disability, please email paidleavestudy@outlook.com for more information.
Request for Proposals: 2019 NDSS Down Sydrome Adult Summit
NDSS is excited to announce that the 2nd Annual Down Syndrome Adult Summit will take place April 4 - 6, 2019 in Detroit, MI. After the triumph of their inaugural Adult Summit, they are excited to open the Request for Speakers for the 2019 Adult Summit. The Adult Summit Planning Committee is seeking proposals for sessions geared towards parents, siblings, professionals, caregivers and self-advocates. Learn more HERE.
State and Local Coalition Updates
Caregiver Coalition of San Diego
On Wednesday, July 25, The Caregiver Coalition of San Diego will be hosting "What Every Caregiver Should Know: A Guided Tour" from 9am-1pm PT at the Solana Beach Presbyterian Church in Solana Beach, CA. This free event will include educational seminars on brain health, caregiver burnout, and much more. Register by calling Cindy Wright at 858-509-2587 and go HERE for more information on other upcoming events.
Caregiver's Respite of Tennessee
On Thursday, August 2, Caregiver's Respite of Tennessee will be hosting "Plain Language Planning: Talking with Providers and Family about Healthcare" from 6pm-8pm CT at the Benjamin L. Hooks Library in Memphis, TN. This training workshop will include sessions on caregiver-provider communication, family communication, health literacy and culture, and communication resources. Register by calling 901-921-0923 or visit their website HERE.
Caregiving Events and Webinars
Webinar: Supporting a New Generation of Caregivers
July 12, 2018 | 2:00-3:00PM ET | Online
Research conducted by Gallup shows that the negative effects of caregiving are particularly severe for younger caregivers. AARP has gathered data indicating that the caregiving community is becoming younger and more diverse. Join C-TAC, AARP, and Gallup for a discussion of the challenges caregivers face and what advocates are doing to support them. Learn more and register HERE.
Webinar: The Game-Changing Impact of Empowering Patients with Health Data
July 19, 2018 | 1:00-1:00PM ET | Online
During this free discussion with thought leaders working in health data, FasterCures will confront some of the questions surfacing around health data access, including: What are the roadblocks to patient access of health data? What are the legal protections for patients and their health information? What are patients currently doing with health data, and what do they want to be doing? Learn more and register HERE.
Alzheimer's Association International Conference
July 22-26, 2018 | Chicago, IL
The Alzheimer's Association International Conference (AAIC) is the largest and most influential international meeting dedicated to advancing dementia science. Each year, AAIC convenes the world's leading basic science and clinical researchers, next generation investigators, clinicians, and the care research community to share research discoveries that will lead to methods of prevention and treatment. Learn more and register HERE.
n4a Annual Conference and Tradeshow
July 28-August 1, 2018 | Chicago, IL
The n4a Annual Conference & Tradeshow is the largest and most prestigious gathering of local aging leaders and professionals in the United States. More than 1,000 Aging Network professionals, as well as nationally renowned decision-makers and experts, participate in the Conference because they know that the issues and programs they care about most will be showcased. Learn more and register HERE.
Global Genes RARE Patient Advocacy Summit
October 3-4, 2018 | Irvine, CA
The RARE Patient Advocacy Summit is the can't-miss event of the year for rare disease stakeholders. The Summit is the largest gathering of rare disease patients, advocates, and thought leaders worldwide. Take advantage of this opportunity to connect and learn from more than 200 experts in rare disease leading 100 educational sessions. Learn more and register HERE.
National Caregivers Conference
October 11, 2018 | Woodbridge, NJ
The National Caregivers Conference, "Health, Technology, and the Family Caregiver," will bring innovative solutions to the increasing demand on family caregivers across the nation while showcasing projects that use technology to improve health and quality of life. This year's conference will feature the nation's first Caregiver Shark Tank. Learn more and register HERE.
Send your caregiving news and events to
info@caregiving.org.
National Alliance for Caregiving www.caregiving.org
STAY CONNECTED:
National Alliance for Caregiving
4720 Montgomery Lane, Suite 205
Bethesda, Maryland 20814, United States
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