Family Caregiver Alliance
Volume XIII, Number 3 - March 28, 2013
Thank you to all who participated in our Public Policy Symposium, Caregiver Assessment: Research, Policy and Practice Issues at the American Society on Aging's (ASA), Annual Conference last week in Chicago. All four research projects related to various aspects of caregiver assessment conducted by FCA over the past 3 years were presented. Complimentary presentations on the research conducted by AARP on the extent of medical tasks provided by families and the results from the Next Step in Care collaboration of hospitals, rehabilitation facilities and home care agencies were provided by United Hospital Fund.

A special thank you to our speakers: Susan Reinhard, Senior Vice President of Public Policy, she directs the Public Policy Institute at AARP; Aaron Tripp, Senior Policy Analyst, The Hilltop Institute; Carol Levine: Director Families and Health care Project, United Hospital Fund; Carol Whitlatch, Assistant Director for Research, Benjamin Rose Institute on Aging; Nicole Wolfe: Senior Research Analyst, FCA ; and Kathleen Kelly, Executive Director, FCA.

Power point slides of Executive Director, Kathleen Kelly's ASA presentation are posted on our website.

A special shout out to our 2012 Rosalinde Gilbert Innovations in Alzheimer's Caregiving Awardees, also honored at a special 5 Year Anniversary Reception at ASA: TimeSlips, University of Wisconsin-Milwaukee Center on Age and Community in Creative Expression; "What is A Caregiver?", public awareness campaign, Amherst H. Wilder Foundation, St. Paul, MN in Policy and Advocacy; Senior Services, L.A. Gay and Lesbian Center, Los Angeles in Diverse and Multicultural Communities.

We've created an online scrapbook, a digital page-turner showcasing all of the current and past Gilbert award winners and their programs. Flip through it on our website!


State Legislation, Policy & Reports
Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare at the state level.

1.  Maine: 
Legislation for Caregiver Support
2. Oregon:
Portland Wins Sick Day and Everybody Benefits

3. Florida: 
Family caregivers' contracts under scrutiny in legislation

4. California: 

State won't cut as deep under agreement to drop lawsuits by in-home caregivers, recipients


5. Minnesota:

Court overturns jobless benefits ban on personal care attendants

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Federal Legislation, Policy & Reports 
Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare across the United States.


1.  The Healthy Families Act would set a national paid sick days standard

2. 2013 Alzheimer's Disease Facts and Figures

3. Two New Reports from Family Caregiver Alliance's National Center on Caregiving

4. Structured Family Caregiving: A model that supports seniors or disabled persons in homes rather than in nursing homes

5. Health Affairs: Strong Social Support Services, Such as Transportation and Help for Caregivers, Can Lead to Lower Health Care Use and Costs


International News
International news surrounding caregiving and related healthcare issues from countries around the world.

1. Ontario, Canada: Bill 21, Employment Standards Amendment Act (Leaves to Help Families), 2013  

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Research Reports & Journal Articles
Organizational reports and professional journal articles of interest surrounding caregiving and healthcare nationally and world-wide.

[No Research Reports this issue] 



Conferences & Trainings
Upcoming trainings, educational conferences and speaker series on caregiving and related healthcare topics.

1. 2013 NASUA HCBS Conference   

2. 8th Annual Medicaid Congress

4. Stanford Geriatric Education Center 2013 webinar series   


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Funding, Media & Miscellaneous
Information and links related to funding and media and more...

1.  Fact Sheets from The Family Caregiver Alliance
2.   Fellowship: California Latino Age Wave Initiative Fellowships - Due April 5, 2013

STATE . . .

state1Maine: Legislation for Caregiver Support

Margaret Craven, Chair of the Maine Senate Health and Human Services Committee, has submitted a bill, An Act to Fully Fund the Homemaker Services Program, that has already received preliminary approval in the House and Senate. It would provide $1.5 million in additional funds in each of the next two fiscal years for the Department of Health and Human Services homemaker services program, helping to eliminate the waiting list. Currently, the homemaker services program costs about $8,000 a year for the average family, compared with about $68,000 a year for nursing home costs....READ MORE  


Representative Richard Malaby submitted An Act to Provide Additional Funding for Respite Care for the Elderly and for Adults with Disabilities, would appropriate $130,000 next year and $330,000 the year after for DHHS's adult day services program. The additional money in the program - which would put total state spending at $450,000 and $650,000 for the next two years, respectively - would help make it possible for adult day services to operate in the black. . . .  READ MORE


state2Oregon: Portland Wins Sick Day and Everybody Benefits   

 The Portland City Council approved a bill establishing a minimum number of sick days for workers throughout the city.   Portland now joins other jurisdictions around the nation in establishing sick day's laws. Portland's new law passed by a unanimousvote by its 5 members. It requires that employers with five employees or less provide at least one hour of unpaid sick leave for every 30 hours worked.  Those with six or more employees will be required to provide at least one hour of paid leave for every 30 hours. Employees have up to five days of leave through the law; employers are always able to go beyond this minimum The new law states, "It is the policy of the City of Portland to ensure that all Persons who work in businesses located in Portland can stay at home when they or a close family member are sick, injured or in need of preventive medical care, in order to prevent the spread of disease and to allow all Portland residents to provide health care for a family member.". . . .    READ MORE



state3Florida: Family caregivers' contracts under scrutiny in legislation
 Two Republicans, Sen. Greg Evers and Rep. Jeanette Nunez, have filed bills (SB 1748 and HB 1323) that would put new restrictions on personal services contracts. The legislation would also require the Florida Agency for Health Care Administration to go after some spousal assets for nursing home care. Now, the healthy spouse can keep their income plus certain assets, such as their home, and up to roughly $115,000 a year in the bank without having to put that money toward nursing home care. But the state doesn't have a process for recovering assets over $115,000. The proposed legislation, which is opposed by many elder advocates, would change that.


State4California: State won't cut as deep under agreement to drop lawsuits by in-home caregivers, recipients

California has agreed to make fewer cuts than planned from its in-home care program as part of deal to get a group of seniors, disabled people and their caregivers to drop several lawsuits blocking recent budget cuts. The California Department of Social Services Director and California Department of Health Care Services Director called the agreement a compromise that will capture savings while eliminating legal costs for the state. Labor leaders called it a fair settlement that they say will provide stable benefits for in-home caregivers and the people they care for. As part of the deal, beginning in July, the state will increase service cuts from 3.6% to 8% to save $160 million in the 2013-14 fiscal year. But it won't go as far as a 20-percent reduction the state had previously approved...READ MORE 



Minnesota: Court overturns jobless benefits ban on personal care attendants

The Minnesota Court of Appeals has overturned a state law barring family personal caregivers from collecting unemployment benefits. Home care workers who take care of their family members deserve equal rights, said Jamie Gulley, president of SEIU Healthcare Minnesota...READ MORE 




fed22013 Alzheimer's Disease Facts and Figures

The Alzheimer's Association recently released a new report detailing the prevalence and cost of the disease. Alzheimer's disease is the sixth leading cause of death in the United States They noted that the number of Americans with Alzheimer's could triple by 2050. In 2013, 5.2 million Americans are living with Alzheimer's. In 2050, that number could be as high as 16 million. Among those Americans aged 65 and over with Alzheimer's, nearly two-thirds (3.2 million) are women. The cost of caring for those with Alzheimer's disease continues to rise, and the total direct costs of caring for those with Alzheimer's and other dementias in 2013 are estimated at $203 billion, including $142 billion in costs to Medicare and Medicaid combined. Caregivers are also affected In 2012, 15.4 million caregivers provided an estimated 17.5 billion hours of unpaid care to people with Alzheimer's and other dementias, a contribution to the nation valued at more than $216 billion. Because of the physical and emotional toll of caregiving, Alzheimer's and dementia caregivers had over $9 billion in higher health care costs of their own in 2012. . . READ MORE 


fed3National Center on Caregiving
Two reports were recently released from Family Caregiver Alliance's National Center on Caregiving. 


fed4Structured Family Caregiving    

Structured Family Caregiving is a model that supports seniors or disabled persons in homes rather than in nursing homes, and provides a stipend to the caregiver, while reducing Medicare and Medicaid spending. Currently, Massachusetts, Rhode Island, Ohio and Indiana are trying the model and are seeing positive results. At the heart of structured family caregiving model is the caregiving team, which consists of the in-home caregiver and the clinical team (nurse and social worker), who develop the care plan together, and who are then supported by a technology platform that allows for the exchange of real-time information. Members of the clinical team regularly visit clients in their homes and keep in constant communication with the caregivers. Caregivers are trained and are responsible for keeping a daily journal of care provided that is transmitted to the clinical team. . .  READ MORE  

fed5Health Affairs: Strong Social Support Services, Such as Transportation and Help for Caregivers, Can Lead to Lower Health Care Use and Costs    
A new article in Health Affairs discusses how the growing evidence base suggests services that address social factors with an impact on health, such as transportation and caregiver support, must be integrated into new models of care if the Institute for Healthcare Improvement's Triple Aim is to be realized. This article examined early evidence from seven innovative care models currently in use, each with strong social support services components. The evidence suggests that coordinated efforts to identify and meet the social needs of patients can lead to lower health care use and costs, and better outcomes for patients. . .  READ MORE


 Int1 Ontario, Canada: Bill 21, Employment Standards Amendment Act (Leaves to Help Families), 2013  


A bill is being considered in Canada, which would amend the Employment Standards Act of 2000, in respect of family caregiver, critically ill child care and crime-related child death or disappearance, leaves of absence. The Employment Standards Act would be amended by striking out "organ donor leave, personal emergency leave" and substituting "organ donor leave, family caregiver leave, critically ill child care leave, crime-related child death or disappearance leave, personal emergency leave". This legislation will allow families to concentrate on supporting their loved ones instead of worrying about losing their jobs.



The 2013 NASUA HCBS Conference: September 9-12, 3012

 The 2013 NASUA HCBS Conference call for sessions is open through March 29th. The conference will be held at the Hyatt Regency Crystal City, 2799 Jefferson Davies Hwy.,
Arlington, VA 22202, Sept 9-12, 2013.
For more information or to submit an abstract


conf2The 8th National Medicaid Congress: May 29-31, 2013 
The Eighth National Medicaid Congress brings together the best and the brightest from Federal and State government, academia, health plans, advocacy groups, and providers to explore the key policy and operational issues that face us. From its opening preconference on managing "super utilizers" to the closing plenary on the road ahead, the Congress offers practical reports from the field, including half-day tracks on dual eligibles and innovative delivery models, and keynote addresses from the leading Medicaid thought leaders.

Onsite Attendance: Hyatt Regency Crystal City, Washington DC  

Webcast participation and. . .MORE INFORMATION


conf3The 15th Annual International Conference on Hoarding and Cluttering: May 2-3
The theme for the 2013 conference, which will be held in San Francisco, CA, is "Community Solutions: Discover Together, Recover Together". Emphasizing communities working together to better understand the issues surrounding hoarding and cluttering challenges, promoting task forces and effective engagement of diverse stakeholders. Featuring 16 breakout sessions, 3 Peer Discussion Groups, and over 40 speakers and presenters. . .

conf4Stanford Geriatric Education Center 2013 webinar series

In collaboration with the American Geriatrics Society, California Area Health Education Centers (AHECs), and the Community Health Partnership, the Stanford GEC will be presenting a series of webinars on dementia topics during 2013. Topics include the new recommendations of the DSM-V diagnostic criteria for dementia; evidence based interventions for persons with dementia and their caregivers; recognizing and differentiating depression, delirium and dementia; ethical issues in Alzheimer's diagnosis; pain control and medications in patients with dementia; and end of life care for dementia patients. There is a $10 fee for each webinar, and it is $25 for CME and CEU credits. For more information and to register go to...MORE INFORMATION




Webinar: How to hire a private duty caregiver: Thursday, April 4th 10:00am PST 
Are you looking to hire a professional caregiver? Asking the right questions upfront during the interview process is critical to a successful experience, and this webinar will help you better prepare for interviewing and hiring a private caregiver. MORE INFORMATION 




fund1Fact Sheets from The Family Caregiver Alliance

Fact Sheets from The Family Caregiver Alliance. Newly translated facts sheets are available in Vietnamese, and Korean on the following consumer topics: Alzheimer Disease and Caregiving; Guide to Understanding Dementia Behaviors; Caregiving and Depression; Dementia, Caregiving and Controlling Frustration (Korean Only); Is This Dementia and What Does it Mean?; Mild Cognitive Impairment. Legal Planning for Incapcity Fact Sheet in Chinese was also updated. FCA has over 50 Fact Sheets, Tip Sheets and Checklists on its website for download or email. . . MORE INFORMATION 


Fellowship: California Latino Age Wave Initiative Fellowships - Due April 5, 2013    


Hispanics in Philanthropy (HIP), The Atlantic Philanthropies, The California Wellness Foundation and The SCAN Foundation are pleased to announce a Request for Proposals (RFP) for the California Latino Age Wave Initiative (CALAWI). The overarching goal of this initiative is to increase awareness of aging issues among Latino nonprofits, and to invest resources in promising work that has a policy perspective. In addition to this grantmaking opportunity, the Latino Age Wave Initiative also include an RFP for a fellowship program for Latino men and women age 50+ to become advocates for improving the well-being of Latino older adults. 

Applications are due no later than 6:00 p.m. Pacific Standard Time on Friday, April 5, 2013




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