Family Caregiver Alliance's Policy Digest

Policy Digest Newsletter
A Newsletter of FCA's National Center on Caregiving

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March 7, 2012

Volume XII, Number 5

I nthis issue section head

State Legislation, Policy & Reports 

  1. State Budgets Still Under Pressure  More...
  2. NY: NYC Opens Nation's First LGBT Center For Seniors  More...
  3. NY: Medicaid LTC And Behavioral Health Systems Face Large Changes  More...
  4. NH: First State To Receive State Balancing Incentives Program Grant  More...
  5. Editorial: "Build More Nursing Homes In South Dakota"  More...

Federal Legislation, Policy & Reports 

  1. Two Opportunities To Give Input: FMLA Update And National Alzheimer's Draft Plan  More...
International News 
  1. UK: Leaders Introduce "Dignity Code" To Prevent Elder Abuse  More...

Research Reports & Journal Articles

  1. Study: 67% Of Californians Don't Want To Be A Financial Burden At End Of Life More...
  2. Survey: In 30 States, More Than One In Six People Don't Have Enough Food  More...
  3. Policies To Better Support Family Caregivers More...

Conferences & Trainings

  1. Join Family Caregiver Alliance At The 2012 Aging In America Conference  More...
  2. International Short Break Association Conference, October 10-12 2012 In Toronto More...
  3. Webinar: Long-Term Services, Supports And Housing: Choices And Advocacy, March 29  More...

Funding, Media & Miscellaneous 

  1. Feisty Grandmother Must Be Relocated  More...
  2. Daughter Who Is Caregiver Starts "Memories Project" As Tribute To Her Father More...
  3. Sandwich Caregivers And Making Decisions About Parent's Care More...
  4. Video Game Improves Cognitive Functioning In Study More...
  5. Documentary: First Person Account Of Living In A Dementia Care Unit, March 29 More... 

Research Registry  

  1. Lewey Body Dementia Association Survey  More...

If you are interested in having your study listed in FCA's Research Registry, please contact: [email protected].  


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state lpr section header image



According to a recent analysis from the Center on Budget and Policy Priorities, 29 states have projected budget gaps that total $47 billion for FY 2013.  This shortfall is in addition to the $530 billion in shortfalls that states already closed during the past four years.  At the same time, states are expected to educate 350,000 more K-12 students and 1.7 million more public university students in FY 2013 as compared to FY 2007-08.   For more information, visit:

CBPP: "States Continue to Feel Recession's Impact" 


Seniors and Advocacy for GLBT Elders (SAGE) and the NYC Department of Aging opened the nation's first senior center intended for lesbian, gay, bisexual and transgender (LGBT) older people on March 1, 2012.  The SAGE Center will offer meals, programming, workshops, social services, leadership opportunities, and social activities.  SAGE notes that the Golden Rainbow Senior Center of Palm Springs, CA, was a "precursor to this historic moment."  The SAGE Center is part of Mayor Bloomerberg's "Innovative Senior Center" (ISC) program that is giving ten leading aging organizations the opportunity to provide creative, needs-based programming to create models for the "senior center of the future."  For more information, visit:

Two new reports from the Medicaid Institute at the United Hospital Fund focus on changes to the Medicaid long-term care and behavioral health systems in New York.  Under the existing system, more than 80% of the 300,000 beneficiaries receive long-term care in fee-for service Medicaid.  Starting in July 2012, dually eligible recipients who are 21 years of age or older and who need more than 120 days of community-based long-term care will be required to enroll in either a capitated Medicaid LTC plan or a care management entity known as a care coordination model.  The second report focuses on changes that will take place over the next three years in the financing and delivery of mental health services and substance abuse treatment.  For more information, visit:

New Hampshire is the first state to receive funding under the State Balancing Incentives Program (SBIP), an initiative that was included in the Affordable Care Act with the goal of incentivizing states to rebalance their spending on long-term care away from institutional care and towards more home and community-based services (HCBS).   New Hampshire will receive $26.5 million over the next three years and the money can be used for services including personal care, respite care, transportation, care coordination, and other services or supports that allow people to remain in their homes.   According to a Kaiser Commission on Medicaid and the Uninsured analysis, 55% of Medicaid LTC expenditures (at the national level) were for institutional care in 2009, despite the fact that this group comprises only 38% of the total Medicaid LTC population.   The same report noted that 44% of New Hampshire's total Medicaid LTC expenditure went to HCBS in 2009, with 23 states spending a smaller percentage on HCBS (as a percent of their total LTC budgets) than New Hampshire.  For more information, visit:
Kaiser Commission on Medicaid and the Uninsured: "State Options That Expand Access to Medicaid Home and Community-Based Services"                                                                                                                            


A recent editorial in the Rapid City Journal supports legislation in South Dakota that would authorize an annual review of the need for nursing home facilities in the state.  The state has banned the construction of new nursing homes for the past 20 years, but the editorial notes that by 2025, one-fourth of the state's residents will be 65 or older.  Under the current building moratorium, 76% of the 8,130 nursing home beds in the state are occupied.  If the law is enacted, facilities would be required to maintain their current Medicaid participation rate.  In the analysis cited in the above article, 41% of South Dakota's total Medicaid LTC expenditures are for Medicaid HCBS.  For more information, visit:

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Two Opportunities To Give Input: FMLA Update And National Alzheimer's Draft Plan

There are two open opportunities to provide comment on federal policies that will have impacts on family caregivers.  First, the draft plan of the National Alzheimer's Plan is available, and HHS is seeking input on the plan until March 30, 2012.   Second, the U.S. Department of Labor (DOL) recently published a notice of proposed rule-making to revise regulations in the Family Medical Leave Act and is accepting comments until April 16, 2012.  In the announcement, the DOL explains that it is seeking comment on several specific provisions, including when FMLA can be taken for family members of members of the Regular Armed Forces, and defining disabilities (including PTSD).  To reduce the burden on family caregivers, the DOL is also considering if enrollment in the new VA caregiver program could also count in deciding eligibility for FMLA.  To provide comments or for more information, visit:

National Alzheimer's Project Act: "Draft National Plan" 

Department of Labor: "Notice of Proposed Rulemaking: FMLA" 



international news section head image

UK: Leaders Introduce "Dignity Code" To Prevent Elder Abuse

The Telegraph reports that leaders in the aging world in the United Kingdom have signed a letter supporting a "Dignity Code" that they hope to implement as a set of uniform standards of care, with a larger goal of preventing abuse and neglect. The code was written by the National Pensioners Convention.  Eventually, the code could be displayed in every care home, doctor's office, and hospital ward, and also implemented into nurse and direct care worker training and written into their employment contracts.  The letter was signed by leaders from several large organizations, including Age UK and the Royal College of Nursing.  For more information, visit:

Telegraph: "Elderly ignored and treated as 'objects' in care system" 

National Pensioners Council Dignity Code 




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Study: 67% Of Californians Don't Want To Be A Financial Burden At End Of Life


The California HealthCare Foundation released a report that combines data from a recent survey of Californians about their end-of-life preferences with data on how Californians die.  While 82% of Californians say that it is important to have their end-of-life preferences in writing, only 23% say they have done so.  While 70% of Californians would prefer to die at home, 42% of deaths in California were in hospitals in 2009, 32% were at home, and 18% were in nursing homes.  For more information, visit:

Final Chapter: Californians' Attitudes and Experiences with Death and Dying 


Survey: In 30 States, More Than One In Six People Don't Have Enough Food

The Food Research and Action Center (FRAC) finds in a recent analysis of Gallup data that more people answered yes to the question: "Have there been times in the last twelve months when you did not have enough money to buy food that you or your family needed?" in the third and fourth quarters of 2011 (19.2% and 19.4%) than in any period since the fourth quarter of 2008.  More than one in six households (16.7%) answered yes to this question in 30 states, in 64 of the 100 largest Metropolitan Statistical Areas, and in 269 of 436 Congressional districts.  For more information, visit:


Food Research and Action Center: "Food Hardship in America 2011"   



Policies To Better Support Family Caregivers


In December 2011, the AARP Public Policy Institute hosted a forum in which ten authors came together and discussed the current state of caregiving in the US.  A recent policy brief from the Public Policy Institute captures ten themes from the written work of the authors and also includes a section focused on public policy options to better support family caregivers.  The policy proposals are grouped into several sections, including better communication, collaboration and coordination with healthcare professionals and also creating greater public awareness and education.  One proposal includes: "Create a national council of family caregivers and advocates, including celebrities, to heighten attention to family caregiving issues, to protect the well-being and vital interests of families, and to identify potential solutions to meet the growing needs."   Another PPI publication, released in February, found that 30% of older adults (Aged 50-64) were in families that spent 10% or more of after-tax family income on health care in 2007, compared to only 18% of adults aged 18-49. For more information visit:


AARP PPI: "A Call to Action: What Experts Say Needs to Be Done to Meet the Challenges of Family Caregiving"   

AARP PPI: "Health Insurance Coverage for 50- to 64-Year-Olds" 




  Conferences and Trainings section head image 



Family Caregiver Alliance will host several sessions at the upcoming conference, including "Family Caregivers: Policy Perspectives and Media Musings," as well as a reception to honor the 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards.  For more information, visit: 


Family Caregivers: Policy Perspectives and Media Musings

The 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards: A Reception Honoring the Award Recipients 

Aging in America 2012 




The 8th International Short Break (Respite) Conference will take place in Toronto, Ontario, Canada from October 10-12, 2012.  The theme for the conference is "Respite is Key."  For more information, visit:





Webinar: Long-Term Services, Supports And Housing: Choices And Advocacy, March 29


The National Consumer Voice for Quality Long Term Care is sponsoring a free webinar on March 29, from 2:00-3:30PM (EDT).  The webinar will provide an overview of options for long-term service and supports at home and in the community and will also address housing rights and overcoming barriers to affordable, accessible housing.  For more information or to register, visit:


Consumer Voice: "Long-Term Services, Supports And Housing: Choices And Advocacy" 


Funding, Media & Miscellaneous banner

Feisty Grandmother Must Be Relocated


Kelly Coleman wrote a personal account in the Globe and Mail about her 102-year-old grandmother who is being forced to relocate out of her retirement home.  Coleman explains that she writes not to start a petition against the move, but because she wants somebody to write a column about her when she is 102.  Her grandmother is facing relocation because she has begun cursing, struggling  with the staff ("all 70 pounds of her") and she has begun wandering into other resident rooms.   Coleman concludes: "In recent years, Nanny has become a shameless flirt. With her memory all but gone, she must be forgiven for occasionally asking about the marital status of men who are related to her. But she still appreciates a handsome man."  For more information, visit:

The Globe and Mail: "My feisty grandmother is being forced to move"


Daughter Who Is Caregiver Starts "Memories Project" As Tribute To Her Father


NPR's "Shots" health blog recently profiled Joy Johnston, whose father, Patrick Johnston, was diagnosed with Alzheimer's disease in 2008.  She explained in the interview, "It can be heartbreaking at times...You have to relearn your relationship with your loved one."  NPR notes that Johnston is one of about 15 million caregivers nationally, who provided $202 billion worth of unpaid care (17 billion hours) in 2010.  The president's recent announcement about increased funding for Alzheimer's research also included $26 million in the proposed FY 2013 budget to help support caregivers of people with Alzheimer's.  Johnston helped her mother pay for care in a nursing home, but even with winning $100,000 in the lottery, it was challenging to afford. Johnston's father passed away in December, 2011, and she began a tribute to him called the Memories Project, in which she is blogging a different story about her father each day.   For more information, visit:


NPR: "The High Price Of Caring For A Loved One With Alzheimer's"


Sandwich Caregivers And Making Decisions About Parent's Care


Kaiser Health News and Bethesda Magazine profiled several baby boomer caregivers in the DC area for a recent article.  The caregivers face similar challenges, but have responded in different ways.  For example, Chris St. Clair, decided to move her mom from her home in a small town in Texas to Maryland.  The move was prompted after she found that her mom had cancelled Meals on Wheels, had been driving against the doctor's orders, and had a near-empty pantry.  Another woman, Annie Hayes, takes turns with her five siblings to have their mom live with them for week-long durations.  Robert Ray works for Caring Transitions, a franchise company that helps the elderly move, and for a recent move from New York City to Chevy Chase, MD, his staff used floor-plans so that the room layout in the new apartment looked similar to the previous apartment.  For more information, visit:    


Kaiser Health News/Bethesda Magazine: "The Parent Trap: Adult Children Care For Elderly Parents" 



Video Game Improves Cognitive Functioning In Study


Results from a recent study of 39 older adults aged 60-77 who played the online video game World of Warcraft indicate that video games may improve cognitive functioning.  In the study, two groups took cognitive tests, and then the intervention group was asked to play approximately 14 hours of the game over the course of two weeks, while the control group did not play the game.  The authors report that for participants who scored high on the baseline cognitive tests, there wasn't improvement, but there was "significant improvement in both spatial ability and focus for participants who scored low on the initial baseline tests." The Wall Street Journal notes in a related article that the 11 million registered users who play World of Warcraft have collectively spent as much time playing the game as humanity spent evolving as a species, "about 50 billion hours of game time, which adds up to about 5.9 million years."  For more information, visit:


Press Release: "World of Warcraft Boosts Cognitive Functioning In Some Older Adults"  

Computers in Human Behavior: "Individual differences in response to cognitive training: Using a multi-modal, attentionally demanding game-based intervention for older adults" 

WSJ: When Gaming is good for you 



Documentary: First Person Account Of Living In A Dementia Care Unit, March 29


"You're Looking at Me Like I Live Here and I Don't" is a first-person account of Lee Gorewitz, a resident at the Traditions Alzheimer's Unit at the Reutlinger Community for Jewish Living in Danville, California who is in the middle stages of Alzheimer's disease.  The national broadcast premier of the film is on March 29, on the PBS series Independent Lens.  The movie has won several awards thus far and according to the producers, it is the first film told from the perspective of somebody with Alzheimer's.  For more information, visit:


PBS Independent Lens  



Research Registry section head



Lewey Body Dementia Association Survey    


The Lewey Body Dementia Association (LBDA) is conducting a survey to assess if there are differences in how grief is experienced by caregivers for individuals with Lewy bodies, Alzheimer's disease, Parkinson's disease with and without dementia, and frontotemporal degeneration.  The survey will also assess the well-being and quality of life for caregivers of individuals diagnosed with the neurodegenerative diseases. Internet access is required to participate in the study, and LBDA needs 500 caregivers who are currently providing care for each different disease that is being studied.  For more information, or to participate, visit:   

Neurodegenerative Disease Caregiver Study



To find caregiver support services in your state, visit FCA's Family Care Navigator

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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, contact [email protected] or visit the Family Caregiver Alliance website at

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