Family Caregiver Alliance's Policy Digest

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

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May 16, 2012

Volume XII, Number 9

I nthis issue section head

State Legislation, Policy & Reports 

  1. WA: Study: Will Expansion Of Family Caregiver Support Program Reduces Medicaid Costs?  More...
  2. Three Case Studies In Long-Term Care: Minnesota, Idaho, Georgia  More...
  3. Meals On Wheels: 78% Increase In Seniors Facing Hunger From 2001 To 2010  More...
  4. TX: New Website, "Take Time Texas" Launched To Help Caregivers  More...
  5. MI: Survey Find 73% of Providers In HCBS Waiver Are Family Or Friends  More...
  6. Policy Brief: How States Can Use Rate-Setting In Managed Care To Promote HCBS More...

Federal Legislation, Policy & Reports 

  1. National Alzheimer's Final Plan Released; Goal 3 Includes Support For Family Caregivers  More...
  2. Federal Hearing: Beyond Mother's Day: Helping The Middle Class Balance Work and Family  More...
  3. Eliminating Social Services Block Grant Would Weaken Services For Disabled And Seniors More...
  4. HHS Announces First 26 Health Care Innovation Awardees More...
International News 
  1. Ireland: Health Service Executive Withdraws Orders To Use Fewer Incontinence Pads More...
  2. Canada: Elder Abuse Commercials "Too Frightening" To Use  More...
  3. United Kingdom: 2.4 Million Are Part Of Sandwich Generation More...

Research Reports & Journal Articles

  1. Study: Elderly People With Dementia Live At Home And In Nursing Homes  More...
  2. New Book Focuses On Sexuality And Aging More...
  3. Study: Decisions On Cancer Treatment Influenced By Age, But Should Consider Other Factors More...

Conferences & Trainings

  1. n4a 37th Annual Conference And Trade Show  More...
  2. American Brain Tumor Patient And Family Conference More...
  3. 8th International Short Break Association 2012 Respite Conference More...
  4. Webinar: Framework For Sustainability Planning for Lifespan Respite, May 30 More...
  5. Forum: "Speak Up! Influential Women Give Voice To The Challenges Of Eldercare"  More...
  6. National Online Dialogue Focused On Improving Veteran Transportation  More...

Funding, Media & Miscellaneous 

  1. New PBS Website Launches: Next Avenue Is Focused On Americans Aged 50+  More...
  2. Hidden Health Threat For Aging Californians: Loneliness  More...
  3. Wife Learns That Frontotemporal Dementia Is To Blame For Husband's Behavior More...
  4. One In Eight Connecticut Residents Serves As A Family Caregiver  More...

Research Registry  

  1. Family Caregiver Interviews And Caregiver Tool Testing  More...

If you are interested in having your registry listed, please contact 


Connect with FCA:

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A study in Washington state will focus on an increase in funding for the state's Family Caregiver Support Program (FCSP) and whether or not the increased funding creates savings due to avoided or delayed placement into long-term care that is funded by Medicaid. In 2009, the state began using the Tailored Caregiver Assessment and Referral (TCARE®) system, which Family Caregiver Specialists use to develop a coordinated care plan tailored to the needs of a family caregiver. In FY 2011, 5,800 caregivers were served, and the legislature increased funding by $3.6 million for FY 2012, with projections of servicing an additional 1,500 caregivers.  The Washington State Institute for Public Policy will work with the Department of Social and Health Services to evaluate if the expansion of FCSP results in lower Medicaid long-term care spending and their findings will be shared with the legislature in August 2012.  For more information, visit:

Preliminary Report: Did Expanding Eligibility for the Family Caregiver Support Program Reduce the Use of Long-Term Care?  


In a follow-up to the "Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers," the AARP Public Policy Institute recently examined three states (MN, ID, GA) to provide a deeper context about why each state received their ranking.  Minnesota was ranked first, Idaho ranked 19th in the study, and Georgia ranked 41st.  The authors explain that a number of factors drive the overall rankings, including state policy decisions and administrative structure, private sector factors (cost of private services, labor supply), as well as poverty and disability rates within the state.  For more information visit,

The Meals on Wheels Research Foundation released a report that finds senior hunger increased to 1 in 7 seniors facing the threat of hunger in 2010, or about 8.3 million seniors.  Their research finds a 78% increase from 2001 to 2010 in the number of seniors experiencing the threat of hunger.   An editorial by the Tennessean noted that over 17% of the elderly in Tennessee face the threat of hunger, the fifth highest rate in the nation, and questioned a recent proposal in the US House that would cut funding for Meals on Wheels and SNAP in order to preserve defense spending. In Virginia, a recent budget proposal would cut $2.5 million in funding for agencies serving seniors with services including home-delivered meals, respite, and personal care.  In a profile of an 88-year old woman in Pennsylvania by, her doctors were able to quickly pinpoint the reason she had fallen several times before and felt faint- a lack of food.  She reluctantly agreed to enroll in SNAP after leaving the hospital, and now receives $140 in monthly benefits.  Pennsylvania recently implemented asset tests within its SNAP program, exacerbating the "catch 22" individuals face if they save even a modest amount of money because it then makes them ineligible for services like SNAP because of asset tests.  For more information, visit:

The Texas Respite Coordination Center, a project of the Texas Department of Aging and Disability Services, recently launched a website to serve the 2.7 million family caregivers in the state.  The website features a searchable inventory of respite services, links to other resources, and a caregiver survey that is being used to better inform the Texas Health and Human Services Commission about the needs of caregivers.  For more information, visit:


A recent survey focused on Michigan's Choice Program, which provides services to older adults age 65 and over and adults 18 and over with disabilities who need a nursing-facility level of care.  PHI partnered with the Michigan Department of Community Health to survey workers within the program.  Seventy-three percent of the workers said they are either family members of friends of the care recipient; 60% report providing uncompensated support or services; and 63% reported providing transportation while only 21% report being compensated for gas/mileage.  A high number of caregivers indicated interest in more training on clinical topics, including: reducing pain (57%); understanding dementia (50%); diseases specific to the participant (53%) and stress management (53%).  The authors explain: "Another area where the assumptions are not consistent with the data is that most workers who are family members live with the participant and are doing this work to reap financial rewards from the program. This assumption is based on the notion or fear that family members and participants are attracted to this type of working arrangement to "game the system" and increase family income. However, less than half of family workers live with the participant they are paid to support. In addition, the survey results reveal that family members and friends make lower wages than those with no prior relationship to the participant and many are unsatisfied with what they are paid."  For more information, visit:



A new policy brief from the Center for Health Care Strategies, Inc, provides a brief overview of how states can structure managed care (for dual eligibles and Medicaid only beneficiaries) to incentivize HCBS over institutional care.  Examples are included from other states, and strategies include: paying the same reimbursement rate, regardless of setting; using a partial capitation for nursing facility care; rewarding transitions back to the community; and providing incentives for HCBS even when services have been "carved out." For more information, visit:

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National Alzheimer's Final Plan Released; Goal 3 Includes Support For Family Caregivers


The National Alzheimer's Plan was released earlier this week and Goal Three is: "Expand Supports for People with Alzheimer's Disease and Their Families."  Under this goal, there are three strategies:  Strategy 3.A. "Ensure Receipt of Culturally Sensitive Education, Training, and Support Materials"; Strategy 3.B: "Enable Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being"; and "Strategy 3.C: Assist Families in Planning for Future Care Needs."  The plan also calls for increased funding, including two major clinical trials, one of which will test a drug on people from an extended Colombian family who do not yet have Alzheimer's but are genetically pre-disposed to it.  A new website,, serves as a gateway to information for people facing Alzheimer's as well as their families.  For more information, visit:

National Alzheimer's Plan  

WSJ: "New Bid to Prevent Alzheimer's Early" 


Federal Hearing: Beyond Mother's Day: Helping the Middle Class Balance Work and Family


The US Senate Committee on Health, Education, Labor and Pensions held a hearing on May 10, focused on the challenges of balancing work and families for women.  Witnesses noted that the Family Medical Leave Act has been used 100 million times since its passage, but because it only requires unpaid leave, many families are financially unable to use it.  One witness cited research that four in ten Alzheimer's caregivers were unable to use benefits under FMLA because the person they were caring for was not a spouse, child, or parent.  Ann O'Leary contrasted the flexibility in her job with another witness, Kimberly Ortiz, who is a retail worker and single mom with two boys. In her testimony, Ms. Ortiz discussed the challenges she faced as an Assistant Manager at the Statue of Liberty, including no paid time off when her first son was born, inconsistent scheduling, and being reprimanded for taking her son to the ER.  Ortiz also discussed a survey she helped facilitate with 500 retail workers in NYC where many of the participants reported similar challenges, including "just-in-time" scheduling where employees are expected to reserve days and call in two hours before their shift to see if they are needed.  For more information, visit:

Beyond Mother's Day: Helping the Middle Class Balance Work and Family  


Eliminating Social Services Block Grant Would Weaken Services For Disabled And Seniors

The House Ways and Means Committee voted in April to eliminate the Social Services Block Grant (SSBG) and a new analysis from the Center on Budget and Policy Priorities (CBPP) examines how this would impact the roughly 23 million people who receive services funded by the SSBG.  The program was created in 1981 as a cost-saving measure that consolidated several funding streams and reduced the federal government's share of funding by about $500 million.  States use the money in a number of ways, though CBPP notes that services for vulnerable and elderly adults are more dependent on SSBG funds than any other service.  SSBG represented 72% of total funding states reported for adult day care services, accounted for 40% of funding for adult foster care and 39% for adult protective services, and according to AARP's Public Policy Institute, nearly half of state aging agencies reported receiving funding from SSBG.  For more information, visit:


CBPP: "Eliminating Social Services Block Grant Would Weaken Services for Vulnerable Children, Adults, and Disabled"   


HHS Announces First 26 Health Care Innovation Awardees

On May 8, Secretary Sebelius announced the first 26 organizations selected as Health Care Innovation Awardees.  The 26 organizations are projected to save a total of $254 million over the next three years through focusing on things like preventative medicine.  The projects encompass a variety of approaches.  The Beth Israel Deaconess Medical Center in Boston is receiving $4.9 million to reduce hospital readmissions for dual eligibles by training 11 health care workers, with a projected savings (from reduced readmissions) of $12.9 million over the three years.  A program in California will hire 60 health care workers to work with 3,250 dual eligibles with disabilities in order to reduce the number of avoidable emergency and hospital visits.  In Louisiana, the Ochsner Clinic Foundation will serve almost 1,000 acute care stroke patients through a telemedicine system called "Stroke Central" that can be used to monitor health on a real-time basis, including reducing complications from urinary tract infections and pneumonia, and replacing outpatient visits.  For more information, visit:


HHS: "We Can't Wait: HHS announces first 26 Health Care Innovation awards"   


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Ireland: Health Service Executive Withdraws Orders To Use Fewer Incontinence Pads

The Irish Times reports that the Health Service Executive (HSE) has withdrawn instructions to nursing homes and public health nurses to restrict the number of incontinence pads supplied to patients.  In an April letter sent by the HSE Primary, Continuing and Community Care services that covers Carlow and Kilkenny, nursing homes and public health nurses were instructed to limit the number of pads to three per day, starting in May 2012.  A second letter, dated May 2, suggested that the number of pads had been reduced by one pad per patient, per day.   Then, on May 10, a third statement, issued by the HSE withdrew all of the restrictions on the number of pads, explaining: ""The HSE wishes to reassure the public that in the area of continence assessment, every effort is made to adhere to best practice in the assessment and supply of continence wear to our patients."  For more information, visit:

The Irish Times: "HSE withdraws call to use fewer incontinence pads" 



Canada: Elder Abuse Commercials "Too Frightening" To Use


The Canadian Press recently reported on three commercials that the Department of Human Resources and Skills Development was considering to publicize elder abuse.  After 11 focus groups with seniors, caregivers, and front-line professionals, a market research firm cautioned the government that one of the commercials, which included a senior looking at a police line-up was "off-putting/frightening" and may deter seniors from reporting abuse.  Other marketing issues included whether or not seniors would be able to easily use websites listed in the commercials, and whether or not 1-800 numbers were provided to report elder abuse or to simply request more information about elder abuse.  The government selected a commercial focused on elder financial abuse and said there will be additional commercials in the future.  For more information, visit:


The Canadian Press: "Focus groups found proposed elder abuse commercial too creepy for TV"    


United Kingdom: 2.4 Million Are Part Of Sandwich Generation


An article in the Telegraph focuses on the challenges of sandwich caregivers who are providing day-to-day support to their parents while also raising children in their own home.  This dual caregiving role may be especially challenging given a recent estimate that individual bills for long-term care is projected to increase by almost 60% by 2025.  The United Kingdom is considering changes to its long-term care infrastructure, including the asset tests faced by people seeking state support for their long-term care.  For more information, visit:


The Telegraph: "2.4m parents juggling elderly care and childcare" 



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Study: Elderly People With Dementia Live At Home And In Nursing Homes


A study in the most recent issue of the Journal of the American Geriatrics Society examines data on dementia patients, transitions, and care settings.  The study included 4,197 community-dwelling older adults, of whom 524 had prevalent dementia, and 999 had incident dementia.  Of people with dementia, they had greater Medicare and Medicaid facility use and more transitions in care per person that those who were never diagnosed.  The authors suggest that their research questions an assumption that all people with dementia live in nursing homes, for example, at time of death, 46% were in homes, 35% were in hospitals, and 19% were in a nursing facility. For more information, visit:

Journal of the American Geriatrics Society "Transitions in Care for Older Adults with and without Dementia" (abstract is free) 

HealthDay: "Older People With Dementia Cared for Mostly at Home" 


New Book Focuses On Sexuality And Aging

A new book, Sexuality and Aging Clinical Perspectives, intended for therapists, counselors, students, and practitioners, focuses on a variety of issues related to sexuality and aging.  Chapter Four, Sexuality in Long-Term Care, addresses issues for the more than two million older adults who live in nursing homes and assisted-living facilities.  The author explains, "Acknowledging the sexuality of older adults in institutional settings is essential, although the issues surrounding the expression of sexuality in institutional settings are often complex."  The book is available as a hardcover, or is also viewable online.  For more information, visit:


Sexuality and Aging: Clinical Perspectives   



Study: Decisions On Cancer Treatment Influenced By Age, But Should Consider Other Factors


A study by a team of doctors at the San Francisco VA Medical Center and University of California, San Francisco, was published in the May issue of the Journal of Clinical Oncology.  The study of over 20,000 patients with non-small-cell lung cancer found that age of the person was a much larger factor in treatment rates, instead of comorbidities.  For example, patients between the age of 65 and 74 who were severely ill with other illnesses received treatment at about the same rate as patients between the ages of 75 and 84 without other comorbidities.  In a press release, Dr. Sunny Wang explained, "It's clear that as human beings and physicians, we fixate on age in deciding whether to pursue cancer treatments, including lung cancer treatments...Instead, we should be looking at our patients' overall state of health."  At the 31st conference of the European Society for Radiotherapy and Oncology, several sessions also focused on the importance of considering the higher rate of comorbidities in the elderly, including in treatment decisions and in recruitment for clinical trials. For more information, visit:


Press Release: "Health, Prognosis Not Taken Into Account When Treating Older Lung Cancer Patients, Study Finds" 

Journal of Clinical Oncology: "Impact of Age and Comorbidity on Non-Small-Cell Lung Cancer Treatment in Older Veterans" (Abstract is free) 

EurekAlert: "Cancer in the elderly: Research fails to keep up with demographic change"   




Conferences and Trainings section head image 



The National Association of Area Agencies on Aging will hold their 37th annual conference and trade show in Denver, Colorado, from July 7-11.  Topics will include AAAs and their roles in managed care; care transition grants; opportunities in the Affordable Care Act; and livable communities.  Early bird registration ends June 7, for more information, or to register for the conference, visit:


n4a Conference




The American Brain Tumor Association's annual conference will take place July 27-79 in Chicago.  In addition to discussing the latest brain tumor research and treatment options, sessions will also include tumor-specific workshops, caregiving strategies, and post-treatment wellness.  For more information or to register, visit:


American Brain Tumor Association Conference 



8th International Short Break Association 2012 Respite Conference


The theme for this year's conference, held in Toronto from October 10-12 is "Respite is Key." Themes during the conference include: "Opening the Door to the Community," "The Key to Strengthening Families," "Unlocking Resources," and "Treasures Found."  Early bird registration is due by June 1, 2012, for more information, or to register, visit:


Short Break Association 2012 Respite Conference 



Webinar: Framework for Sustainability Planning for Lifespan Respite, May 30  


A webinar on May 30 from 3:00 to 4:30PM (EDT) will focus on a comprehensive approach to sustainability planning for Lifespan Respite grantees and their partners.  "The 90 minute session is designed to help Lifespan Respite grantees launch effective and successful sustainability planning efforts by clarifying the concepts, people, steps and critical resources they need to have in place to get started." While the webinar is targeted to Lifespan Respite grantees and their partners, it would also be of interest to respite providers, community and faith-based organizations, Area Agencies on Aging, and others interested in funding sustainability for respite services.  Laura Martinez, Senior Program Associate with the Finance Project, will be the presenter.  For more information, or to register, visit:


Webinar: Framework for Sustainability Planning for Lifespan Respite 



Forum: "Speak Up! Influential Women Give Voice To The Challenges Of Eldercare"


A Health Policy Forum Roundtable, hosted by the Altarum Institute on June 5, will include authors Lynn Alexander, Eleanor Clift, Muriel Gillick, Joanne Lynn and Cheryl Woodson.  Each of the women will discuss their experiences and their books, which range from hands-on advice for caregivers to discussions of the political, social, and cultural ramifications of a fragmented health and social service system.  The event will take place in Detroit, Michigan from 9:30-3:30PM, and will also be webcast.  For more information, or to register, visit:


Altarum Institute Health Policy Forum Roundtable 



National Online Dialogue Focused On Improving Veteran Transportation


A national online dialogue, sponsored by the federal government, from May 7 to June 8 is focusing on strategies to improve access to transportation for veterans returning to civilian life.  The online dialogue is open to "anyone with a personal or professional stake in the issue."  So far, 280 people have registered, 40 ideas have been posted, 231 votes have been cast, and 123 comments have been posted.  To join the conversation or offer your suggestions, visit:


National Online Dialogue on Veterans Transportation 


Funding, Media & Miscellaneous banner

New PBS Website Launches: Next Avenue Is Focused On Americans Aged 50+ 


Twin Cities Public Television, in partnership with PBS, American Public Television, and national PBS stations, launched the "Next Avenue" website earlier this week.  The website is intended to be a hub to "engage, inspire and inform" Americans aged 50 and older, a population that will grow from 99 million today to 127 million by 2030.  The website will provide in-depth content (Family Caregiver Alliance is a content partner) for visitors on a number of topics, including health, finances, work, leisure, and caregiving.  For more information, visit:

Next Avenue


Hidden Health Threat For Aging Californians: Loneliness recently addressed an issue that is sometimes overlooked when considering health and long-term care: social isolation.  The author cites the roughly 20% of California seniors who were not allowed to continue in the scaled down version of the Adult Day Health Care program and suggests that the result for many may be more time at home alone.  Laura Carstensen, who directs the Stanford Center on Longevity, suggests that isolation is as large a risk factor for mortality as cigarette smoking.  Several programs have sprung up throughout the state to reach isolated seniors, including a program in Oakland that holds almost 70 classes a week for seniors who can call a central number to join a telephone classroom. The director of the program explains that the program has grown from six women eight years ago to 667 participants last year.  In another program, volunteers call 550 older adults in a three county area and socialize with the seniors, check on their health, and remind them to eat, drink, and take their medicines.  Assemblymember Mariko Yamada, who chairs the Assembly Aging and Long-Term Care Committee, cautions that the state will need to improve how it approaches aging care: 'There's a fundamental flaw in the way we look at services in general...We try to define them as either social or medical... It's really both."  New America Media also focused on issues faced by isolated seniors in Chinatown, San Francisco, including isolation, poverty, and a fear of seeing doctors because friends have passed away when they've gone to the hospital. For more information, visit:


HealthyCal: "The Health Perils of Aging: Lonely and Sick"

New America Media: "Chinatown Death Triggers Worries About Isolated Elders" 


Wife Learns That Frontotemporal Dementia Is To Blame For Husband's Behavior


As part of the New York Times series, The Vanishing Mind, a couple from Manhattan was recently profiled for their experience with the husband's frontotemporal dementia.  Ruth French explains that prior to her husband's diagnosis, she was furious with his behavior which included a lack of communication, being fired, and investing in money-losing companies, and she even considered divorce.  However, after Michael French's diagnosis in 2007, she apologized and has stood with him during the progression of the disease.  The article provides an overview of the differences between Alzheimer's and frontotemporal dementia, as well as the challenges faced by families when friends and families pull away, car keys must be hidden, and bosses don't understand when employees have to leave in the middle of the day for a caregiving crisis.  For more information, visit:


NYT: "When Illness Makes a Spouse a Stranger" 



One In Eight Connecticut Residents Serves As A Family Caregiver


The Connecticut Mirror recently profiled several family caregivers and their experiences.  Mimi Galusha had worked with her father, Donato DiMatteo to care for her mom with Parkinson's disease. However, 18 months ago, her father had a stroke, losing control of the left side of his body, and Galusha became responsible for both parents in addition to her own children.  Hiring aides cost almost $10,000 a month in her parent's savings, and she used up most of her own retirement savings prior to her parents acceptance into a state program that pays for the cost of direct care workers.  Eventually, she was forced to stop working.  Another caregiver, Arlenne O'Brien is also profiled.  After four years of caregiving for her mother with dementia, she made the difficult decision to have her mother move to a nursing home.  O'Brien visits her mother's nursing home so often that a new staff member thought she was an employee. For more information, visit:


Connecticut Mirror/Kaiser Health News: "Caring, Long Term: A Way Of Life For 1 In 8 Connecticut Residents"  




Research Registry section head


Family Caregiver Interviews and Caregiver Tool Testing


We know there is often a personal financial burden to care for a loved one. We are developing an online tool to make it easier for primary family caregivers to receive financial support from siblings, relatives and friends.  


Help shape this caregiver tool!  We seek caregivers who:

  • Currently care for a family member, locally or long-distance     
  • Coordinate tasks, care or finances with 2+ family members
  • Spend at least $100/month of personal money on care for loved one
  • Use the internet regularly at home

PHONE INTERVIEW. One hour. To describe your needs and challenges with care and finances as a family caregiver. $20 gift card mailed to you for your time.

PROTOTYPE TESTING. Two weeks. Provide honest feedback by phone during three calls; total 75-90 minutes. $50 gift card mailed to you for your time.

CONTACT: Please contact Christine at (510) 909-5740 or  

For more information, visit FCA's Research Registry.  

Family Caregiver Interviews and Caregiver Tool Testing



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 or visit the Family Caregiver Alliance website at

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