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A Message for President Barack Obama:
We Need a National Agenda to Strengthen Caregiver Support

FCA strongly encourages the new Obama Administration to initiate and support policies that take family caregivers into account and sustain them in their role as the primary providers of long-term care in this country.

Family caregiving is typically at the core of what sustains frail elders and adults with disabilities, yet caregivers often make major sacrifices to help loved ones remain in their homes. With the dramatic aging of the population, we will be relying even more on families to provide care for their aging parents, relatives and friends for months and even years at a time. Yet, the enormous pressures and risks of family caregiving—burnout, compromised health, depression and depletion of financial resources—are a reality of daily life for millions of American families and pose great strain on family caregivers, many of whom are struggling to balance work and family responsibilities.

Families need information and their own support services to preserve their critical role as caregivers, but frequently they do not know where to turn for help. When they do seek assistance, many community agencies cannot provide adequate supports due to funding constraints and outdated policies. The federal government can help by taking steps to ensure that all family caregivers have access to caregiver assistance and to practical, high quality, and affordable home and community-based services.

These are tough economic times, but supporting family caregivers is one of the most cost-effective long-term care investments we can make. As long as caregivers are able to provide care, they are often able to delay costly nursing home placements and reduce reliance on programs like Medicaid.

We encourage the Obama Administration to support a national agenda that will:

• Authorize and fund a National Resource Center on Caregiving


• Modernize Medicare and Medicaid to better support family caregivers
  • Improve hospital discharge and post-acute care under Medicare.
  • Establish a caregiver assessment demonstration in Medicaid Aged/Disabled Home and Community-Based Services (HCBS) Waiver programs.
  • Ensure access to care coordination services.
  
  
• Commission an Institute of Medicine (IOM) study on family caregiving


• Provide adequate funding for programs that assist family caregivers
  • Double the funding for the National Family Caregiver Support Program (NFCSP) under Title III-E of the Older Americans Act.
  • Fully fund the Lifespan Respite Care Act.
  
  
• Expand the Family and Medical Leave Act (FMLA) and other paid leave policies


• Promote policies that expand the geriatric care workforce


• Enact legislation providing refundable tax credits for family caregivers and employers


• Strengthen Social Security by recognizing the work of family caregivers

What Is the Burden of Caregiving?

Various studies have measured the impact of caregiving on daily life. Researchers have found that:

• Family caregivers face a range of health risks and serious illnesses themselves.


• Family caregivers experience high rates of depression, stress and other mental health problems.


• Elderly spousal caregivers experiencing mental or emotional strain have a 63% higher risk of dying than non-caregivers.


• The long-term effects of caregiving on women's economic well-being are profound: One study found that caregiving for a parent substantially increased women's risks of living in poverty and receiving public assistance in later life.


• 67% of family caregivers report conflicts between caregiving and employment, resulting in reduced work hours or unpaid leave.


• Informal caregivers personally lose about $659,139 over a lifetime: $25,494 in Social Security benefits; $67,202 in pension benefits; and $566,443 in forgone wages.


• Family caregivers spend an average of $5,531 a year on caregiving expenses, including household goods, food, transportation, medical co-payments, prescription drugs, and medical equipment and supplies.

Why Is a Federal Investment in Caregiver Support Vital?

While economic constraints are very real, providing support for family caregivers through publicly-funded programs isn't just the right thing to do, it is sound fiscal policy. Consider:

• In 2007, the estimated economic value of caregivers's unpaid contributions was approximately $375 billion—that's how much it would cost if that care had to be replaced with paid services.


• Lost productivity due to informal caregiving costs businesses $17.1 billion annually.

With creation of the Older Americans Act's National Family Caregiver Support Program (NFCSP) in 2000, Congress took an essential first step in acknowledging family caregivers' major contributions to long-term care. Building on the success of the NFCSP, and in response to the aging of America, a national caregiving policy agenda would contribute to a more coordinated, systematic effort to recognize and strengthen the central role of families within the context of long-term care reform.

To see further details of the FCA 2009 Public Policy Statement, please go to: http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2279

 © 2009 Family Caregiver Alliance

 

Legislation to Watch

As 2009 begins, we are faced with a recession that is leaving federal and state governments, as well as caregiving families, struggling to make ends meet. More than 40 states are facing looming or current deficits, which has caused at least 15 states to propose reductions in funding for home and community-based services for older adults and adults with disabilities, including personal and home care services. These financial challenges also threaten caregiver support programs. For more information about the financial crises facing states, visit the Center on Budget and Policy Priorities.

Fortunately, not all the news is bad. With a new Presidential Administration comes the prospect of health and long-term care reform and opportunities to ensure that caregivers' voices are heard and their needs addressed. Further, there were some accomplishments at the federal and state levels in the latter part of 2008:

• On November 12, 2008, Senator Max Baucus, Chairman of the Senate Finance Committee, released Call to Action: Health Reform 2009, a paper which lays out his vision for health care reform. Along with addressing health care coverage, quality and cost, the paper acknowledges the central importance of family caregivers in providing long-term care. It states, "Providing support for family caregivers should also be an important part of any reform plan. The plan would provide assistance to individuals, families and caregivers in navigating the complex and fractured long-term care services and supports system." To read the full report, visit: http://finance.senate.gov/healthreform2009/home.html


• On December 10, 2008, Senator Herb Kohl (D-WI), Chairman of the Senate Special Committee on Aging, introduced the Retooling the Healthcare Workforce for an Aging America Act (S. 3730). The bill aims to expand education and training opportunities in geriatrics and long-term care for licensed health professionals, direct care workers and family caregivers in order to better prepare the workforce for meeting the needs of the growing older adult population. Specifically, the bill permits state Medicaid programs to do an assessment of a family caregiver's needs and to provide referral to appropriate services when he or she is caring for a Medicaid beneficiary who qualifies for home and community-based services and who relies on the family caregiver for much of their care. The bill also ensures that family caregivers of Medicare beneficiaries are provided information and referral to community support services at the point of discharge from a hospital, skilled nursing facility, or rehabilitation facility.


• Senator John Kerry (D-MA), Rep. Frank Pallone (D-NJ) and Rep. Diana DeGette (D-CO) introduced the Empowered at Home Act (S. 3327/ H.R. 7212). The bill would: ensure that Medicaid spousal impoverishment protections available to couples in nursing homes also are available to those who choose Home and Community-Based Services (HCBS), remove barriers and make it easier for states to offer HCBS to Medicaid beneficiaries, develop Medicaid demonstration grants for evidence-based health promotion and disease prevention programs, and more. The bill will have to be reintroduced in 2009 in order to be considered in the new Congress.


• Missouri voters passed Proposition B, a long-term care initiative on last November's ballot. It will create a Quality Home Care Council that will run a statewide registry of home care workers, coordinate backup home care services, offer trainings, and negotiate with workers over wages and benefits if they choose to form a union. Similar councils exist in Oregon, Washington, Massachusetts, Michigan, Wisconsin and California.


• On November 4, Washington voters approved Initiative 1029, which requires increased training of workers who provide long-term care services. Under the new law, home and community-based long-term care workers must complete 75 hours of training to receive state certification. They will need to pass an exam to be certified as home care aides and background checks will be required for all levels of care.

We encourage you to share your thoughts about these initiatives with your legislators. To learn more, visit FCA's online database of legislation from 2004 to the present. Archived bills can be searched by state or according to the policy strategy used to support family caregivers, such as tax incentives, Medicaid policies, and respite assistance.

To keep up-to-date on caregiving issues, subscribe to Caregiving PolicyDigest from FCA's National Center on Caregiving. For your free subscription, click here

 © 2009 Family Caregiver Alliance

 

Clearinghouse

CMS Launches Efforts to Help Family Caregivers
The Centers for Medicare and Medicaid Services (CMS) launched an initiative to assist family caregivers caring for Medicare beneficiaries. As part of the effort, CMS launched Ask Medicare, a website for caregivers which answers questions about Medicare coverage and benefits, provides links to key organizations that assist caregivers and beneficiaries, presents personal stories from caregivers, and offers information and tools to help caregivers address common problems. In addition, CMS developed a checklist to help patients and their family caregivers prepare to leave a hospital, nursing home or other health care setting. This discharge planning document includes a series of 16 questions for patients and caregivers to ask themselves and to discuss with hospital personnel to ensure they have a clear understanding of the patient's needs once they return home and how those needs will be met. Visit Ask Medicare and the Discharge Checklist

More from Medicare
The CMS website offers another new tool: a rating system for nursing homes. While the site has had a "nursing home compare" feature in the past, a simpler system rates facilities on a point basis, from the lowest (one star) to the highest (five stars), based on previous information. Nationwide, only 1893 homes received five stars, while 3545 received one. Experts caution that the system offers a guide, but more investigation is needed before you choose a facility. To see the ratings, click here. California Advocates for Nursing Home Reform (CANHR) also offers information on choosing a facility. For information, click here.

Medicare Fact Sheets Now Available in Five Languages
Ten Medicare fact sheets, translated to Chinese, Korean, Russian, Spanish and Vietnamese, are now available on www.cahealthadvocates.org, the website for California Health Advocates. The fact sheets help Medicare beneficiaries understand Medicare, and their rights and benefits. Each fact sheet focuses on a specific Medicare topic. The translations were funded by the California Department of Aging and the Centers for Medicare and Medicaid Services.

New Report: Economic Value of Caregiving Jumps to $375 Billion
The AARP Public Policy Institute released a 2008 update of its 2007 report, Valuing the Invaluable: The Economic Value of Family Caregiving. The new report reveals that the economic value of caregiving increased to $375 billion in 2007, up from $350 billion in 2006. The report also states that, in 2007, about 34 million family caregivers provided care at any given point in time, and about 52 million people provided care at some time during the year.

Study of Hispanic Family Caregiving in the U.S.
Evercare and the National Alliance for Caregiving released the Evercare Study of Hispanic Family Caregiving in the U.S. This survey of Hispanic caregivers contains information about the prevalence of caregiving in Hispanic households, the impact caregiving has on caregivers' employment, the burden of caregiving and the type of support Hispanic caregivers want. The study finds that more than one in three Hispanic households (36%) have at least one family member caring for an older relative, compared to 21% of all U.S. households with a caregiver.

"Videocaregiving" Website Launched
Terra Nova Films recently launched a videocaregiving website with resources available for family caregivers nationwide. The website contains a growing list of visual educational materials relating to caregiver issues, and it will eventually include the development of several new sections, including a social networking community. Visit: http://evercarehealthplans.com/studies.jsp

New PBS Show on Parkinson's Disease
My Father, My Brother, and Me, a "Frontline" production, airs Feb. 3, 2009 on PBS (check local listings for times). In it, Dave Iverson and fellow PD sufferers actor Michael J. Fox and writer Michael Kinsley describe how they became caught up in the politics of Parkinson's research after federal funding for promising stem cell research was restricted in 2001, three years before Iverson got his diagnosis. For more information on the broadcast, click here.

Conferences and Trainings

FCA Hosts Symposium on Policy and Family Caregiving at Aging in America Conference March 18
FCA's National Center on Caregiving (NCC) will host a cutting-edge symposium called "Policy, Politics and Family Caregiving: Federal and State Perspectives" at the 2009 Aging in America Conference on Wednesday, March 18, 2009 from 2:00 - 5:00 p.m. A distinguished panel of policy experts and advocates will provide a national perspective on caregiving in the context of health and long-term care reform and explore innovative and forward-thinking policies and advocacy efforts in the states. The symposium will be held during the annual conference of the American Society on Aging and the National Council on Aging, March 15-19 in Las Vegas. To register for the conference and to sign up for the free symposium, click here.

Free Six-Week Internet Class for Veterans and their Caregivers
The Stanford School of Medicine and the Department of Veterans Affairs are offering new online workshops for family caregivers of veterans or veterans who serve as caregivers. Eligible participants are in California, Southern Nevada and Hawaii and provide care for individuals with traumatic brain injury, post-traumatic stress disorder or dementia. The course covers self-care methods to maintain or enhance health, stress reduction for the caregiver and veteran, dealing with difficult emotions, communications skills, planning for the future, and more. The classes have varying start dates, and will be filled on a first come, first served basis. For more information, click here.

 © 2009 Family Caregiver Alliance

 

California and Bay Area

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Bulletin Board

Residents of San Mateo County age 55-plus, who are in need of emotional support, can take advantage of the free counseling services from San Mateo County's Senior Peer Counseling. Volunteers are professionally trained to help support their peers with issues such as isolation, challenges of getting older, and depression. A separate program, La Esperanza Vive, offers the same services to Spanish-speaking residents age 60 or older in San Mateo County. For information in English, please call (650) 573-2716. For Spanish, call (650) 573-2257.

The Little House, Roslyn G. Morris Activity Center in Menlo Park offers a variety of programs to people of all ages. The Little House offers daily lunch, weekly movies and outings, classes in arts and crafts, language, fitness and computer instruction. Services such as health insurance counseling, legal and tax assistance, blood pressure screening and acupuncture are also available. Membership is $50 annually for one person and $87 for two people. For more information call (650) 326-2025 or click here.

Need legal advice? The Senior Legal Hotline provides free legal advice to people age 60 and older. A qualified attorney or paralegal will offer advice on any legal topic. Seniors can call the hotline at (800) 222-1753 or email a question. Responses to emailed questions will be provided by phone.

Community Resources for Independent Living (CRIL) offers independent living services at no charge to persons with disabilities living in southern and eastern Alameda County. To be eligible for services, an individual must have a disability and be paired with an independent living coordinator. Services include housing assistance, benefits counseling and advocacy, and information about assistive technology. CRIL also offers the Personal Assistance Program which provides a list of personal care attendants to individuals who need in-home support services. To learn more, call (510) 881-5743 or click here.

Rebuilding Together Marin assists low-income homeowners, particularly the elderly, physically challenged, or families with children, to live in safety and independence through volunteer repair of owner-occupied homes and nonprofit facilities. For more information or to request an application, call (415) 924-4412. Other cities in the Bay Area also participate in Rebuilding Together, including Oakland (510) 625-0316; San Francisco: (415) 905-1611; Silicon Valley: (408) 578-9515; Diablo Valley: (925) 941-4911; and Albany/Berkeley/Emeryville: (510) 644-8979.

The Rainbow Learning Program at Loma Vista Adult Center in Concord provides an enrichment program for the frail elderly who are usually unable to participate in community activities. The program's mission is to maintain or improve physical mobility, mental alertness, social skills, independence and quality of life. Activities include painting, arts and crafts, gentle exercise, music, current events, and memory-enhancing games. The program also provides respite for families and caregivers. There is no charge for participants, but donations are accepted. The program is part of the Mt. Diablo Adult Education Center. For further information contact Susie Stanley at (925) 682-8000 ext. 3916.

 © 2009 Family Caregiver Alliance

 

Support Groups

Grupo de Apoyo/Spanish-speaking Caregiver Support Group

Sponsor: Family Caregiver Alliance
Location: San Francisco
Time: Segundo lunes de cada mes/Second Monday of the month 2:00 - 4:00 p.m.
Content: Grupo de apoyo en español para los que cuidan a un familiar mayor. Support group for Spanish-speaking caregivers who are caring for an elderly loved one.
Contact: Lois Escobar, (415) 434-3388

Online Caregiver Support Groups

Sponsor: Family Caregiver Alliance
Location: Your computer
Time: Available 24 hours a day
Content: Four free online support groups

• The Caregiver Online Group is for families, partners and other caregivers of adults with disorders such as Alzheimer's, stroke, brain injury and others.


• The LGBT Caring Community Online Support Group is for lesbian, gay, bisexual and transgender caregivers of adults with cognitive impairments and/or other chronic health problems.


• Link2Care Group is part of a secure website dedicated to clients of California's Caregiver Resource Centers (CRCs). For information about participating in this moderated listserv, call your local CRC or (800) 445-8106.


• The Huntington's Disease and Movement Disorders Online Group is for anyone—diagnosed individuals, families, friends and professionals—living with the day-to-day challenges of HD, Parkinson's or another movement disorder. The group is facilitated by a registered nurse with extensive personal and professional HD experience.


• All of these groups offer participants supportive environments in which to ask questions and share their experiences, resources and ideas.

Contact: To register for any of the groups, visit www.caregiver.org and click on "groups." To join the Link2Care group, you must contact your local CRC to preregister.

RELAX and RENEW Caregiver Support Group

Sponsor: San Francisco Adult Day Services
Location: San Francisco
Time: Second Wednesday of the month, 4:30 - 6:00 p.m.
Content: A combination workout/support group for caregivers. The group begins with stretches and gentle exercises, and then takes some time for group members to share about their caregiving experiences. An ideal way to get support, improve your health and reduce stress.
Contact: Patty Clement, (415) 452-3500

LGBT Alzheimer's Caregiver Support Group

Sponsor: Alzheimer's Association, New Leaf Outreach to Elders
Location: San Francisco
Time: Third Saturday of each month, 10:00 - 11:30 a.m.
Content: Support group for people taking care of a partner, spouse, other family member or friend with Alzheimer's disease, other type of dementia. A safe place to discuss caregiver stress and issues, meet others who are in similar situations and learn and share information.
Contact: Karen Smillie, New Leaf Outreach to Elders, (415) 626-7000 ext. 458

Huntington's Disease Support Groups

Support groups in Bay Area locations for people with Huntington's disease, their families, partners, friends and other loved ones. Sponsored by the Huntington's Disease Society of America, Northern California Chapter.

Marin: Tiburon Time: Third Thursday of the month, 7:30 - 9:00 p.m.
Contact: Andrea Zanko, (415) 476-9320

South Bay: Palo Alto Time: Second Tuesday of the month, 7:00 - 8:30 p.m.
Contact: Lucille Towner, (650) 967-0679 or Andrea Kwan, andreak@stanford.edu

Stroke Support Group

Sponsor: Community Resource Center/California Pacific Medical Center.
Location: San Francisco
Time: First Thursday of the month, from 1:00 - 2:00 p.m.
Content: Group provides an environment offering support, education, resources and camaraderie for stroke survivors.
Contact: Scott Plymale, (415) 923-3167.

Atypical Parkinsonism Caregiver Support Group

Sponsor: Parkinson's Patients Support Groups, Inc. (PPSG)
Location: San Mateo
Time: Meets approximately every six weeks on Sunday, from 5:00 - 7:00 p.m.
Content: Support group for caregivers of people with Atypical Parkinsonism, which includes: PSP (progressive supranuclear palsy), LBD (Lewy-body dementia), MSA (multiple system atrophy), and CBGD (corticobasal ganglionic degeneration). Please note: This group is not appropriate for caregivers of people with Parkinson's disease.
Contact: Robin Riddle, (650) 233-9277, or rriddle@stanfordalumni.org.

Early Stage Alzheimer's Group

Sponsor: Alzheimer's Association of Northern California/Northern Nevada
Location: Mountain View
Time: Eight-week sessions held throughout the year
Content: Support group for people with early-stage Alzheimer's disease (or a related disorder) offers education and support to help people understand and cope with their illness. Separate, concurrent sessions for loved ones will address questions and concerns specific to early dementia. Pre-enrollment interview is required. Fee per session; scholarships are available.
Contact: Angel Duncan or Helen Done, (800) 272-3900.