Family Caregiver Alliance

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Who We Are
Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. FCA now offers programs at national, state and local levels to support and sustain caregivers.


History
More than 25 years ago, a small task force of families and community leaders in San Francisco came together to create support services for those struggling to provide long term care for a loved one who did not "fit" into traditional health systems: adults with Alzheimer's disease, stroke, Parkinson's, traumatic brain injuries and other debilitating disorders. The diagnoses were different, but the families shared common challenges: isolation, lack of information, few community resources, and drastic changes in family roles.

The task force's early efforts had three lasting results: the formation of Family Caregiver Alliance; the genesis of a statewide network of Caregiver Resource Centers; and the beginnings of a national movement to recognize the immense contribution of family caregivers to the long-term health care of the ill and elderly in our country.

National, State and Local Programs
In 2001, FCA established the National Center on Caregiving to advance the development of high-quality, cost effective programs and policies for caregivers in every state in the country. FCA serves as the lead agency in California's statewide system of Caregiver Resource Centers and operates the Bay Area Caregiver Resource Center, in the six-county San Francisco Bay Area.

FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.



2007 Policy Statement



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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. Family Caregiver Alliance (FCA) – founded 30 years ago in 1977 – serves as a public voice for these caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy. Long recognized as a pioneer among caregiver organizations, FCA operates programs at local, state and national levels. FCA provides direct services to family caregivers in the San Francisco Bay Area and is the lead agency and model for California’s statewide system of Caregiver Resource Centers. Since 2001, FCA’s National Center on Caregiving (NCC) has advanced the development of high-quality, cost-effective policies and programs for family caregivers at the national level and in every state in the country.

FCA supports a national agenda to strengthen policies and federal initiatives that recognize and support the estimated 44.4 million family caregivers in the United States. A federal investment in caregiver support is needed now more than ever. Today, the enormous pressures and risks of family caregiving, including burnout, compromised health, depression and depletion of financial resources, are a reality of daily life for millions of American families. Families need information and their own support services to preserve the critical role that they play in the nation’s long-term care system, 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 out-dated policies. The federal government can help by taking steps to ensure that all family caregivers have access to caregiver assistance and practical and affordable home and community-based services.

FCA supports a national agenda to:

Authorize and fund a National Resource Center on Caregiving
Congress should establish a National Resource Center on Caregiving to strengthen its commitment to America’s caregiving families, to help address our nation’s long-term care crisis, and to provide meaningful and quality services and supports for unpaid caregivers. The Center would serve as a clearinghouse for “best practices” in family caregiver services and provide information, support, training and technical assistance to federal and state initiatives and programs that help ease the burdens on our nation’s family caregivers. Investing in innovation, promising practices and technical assistance is a cost-effective strategy to assist the federal and state governments, policy makers, researchers, and service providers in responding to the large and growing needs of unpaid, family caregivers.


Modernize Medicare and Medicaid to better support family caregivers
Improve hospital discharge and post-acute care under Medicare. Steps should be taken to require that an assessment of both the family caregiver’s needs and those of the beneficiary, as well as appropriate caregiver education and training, be made part of a “safe and adequate discharge” from hospital to home.
Establish a caregiver assessment demonstration in Medicaid Aged/Disabled Home and Community-Based Services (HCBS) Waiver programs. This demonstration project would provide incentives for states to include an assessment of a caregiver’s own needs in existing assessment processes for HCBS, with linkage to appropriate supports, whenever the Medicaid beneficiary’s individualized plan of care cannot be implemented without the family caregiver. By assessing the family caregiver’s health, willingness to provide care, and training and support needs, this enhanced model would promote beneficiary and family-centered care and help assure the health and safety of Medicaid beneficiaries who are served in the community rather than in nursing homes.


Commission an Institute of Medicine (IOM) study on family caregiving
Congress should request and fund an IOM study and policy blueprint on family caregiving in the United States. The study should include an examination of approaches to improve: 1) care coordination and transitional care across health care and social service settings which include families as part of the care team; 2) caregiver assessment protocols and standards in public programs when a person’s care plan depends on assistance from the caregiver; 3) evidence-based programs of caregiver support services; and 4) strategies for mitigating the financial problems families face when providing long-term care. An IOM report would provide the federal government and the public with the high-level independent guidance and policy blueprint that America’s family caregivers need.


Expand caregiver support services for family members of wounded Armed Forces personnel and veterans

Congress should include family caregivers in legislation and other initiatives that address the physical and mental health conditions, including traumatic brain injury, of veterans and soldiers returning from war. Legislative proposals should recognize that family members are the mainstay of care and support for soldiers returning home and include the provision of caregiver education, counseling and other family-centered support services. In addition, Congress should provide adequate funding to the Defense Department to establish a Traumatic Brain Injury Panel and to develop and disseminate curricula for families caring for wounded soldiers and veterans with head injuries, as specified in the Defense Authorization Act for FY 2007 (P.L. 109-364).


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. Congress maintained funding for the NFCSP in FY 2007 at the previous year's level of $157.7 million. 1. The NFCSP has experienced level or only modest increases in funding since its inception in 2001. For many of the nation’s family caregivers of frail elders, the NFCSP is the only program to sustain and support them in their caregiving role. Funding for the NFCSP must be doubled to the original authorization of $250 million to address the current under-funding of this vital program.
Fully fund the Lifespan Respite Care Act. Respite services offer essential relief for family caregivers so they can take a break from the demands of providing constant care. The Lifespan Respite Care Act (P.L.109-442), enacted in December 2006, authorizes funds to develop a network of respite programs at the state and local levels and provides planned or emergency respite services for family caregivers of children and adults.


Enact legislation providing refundable tax credits for family caregivers and employers
Refundable tax credits would help cover families' long-term care costs and better enable them to remain in their caregiving role. Caregiver tax credits could be structured as a standard amount for eligible taxpayers who carry out family caregiving responsibilities, as a credit for specified caregiving expenses (such as home care services, respite, food, and transportation), or as a credit for employers who provide certain long-term care services for employees and their families. To help defray future long-term care costs for families, taxpayers should also be provided with a refundable tax credit for the purchase of long-term care insurance. Refundable tax credits can help compensate for the thousands of dollars in lost wages and other expenses that family and informal caregivers at all income levels incur, and they can encourage businesses to create more family-friendly working environments. A number of bills have been introduced in recent years to provide caregiver tax incentives.


Strengthen Social Security by recognizing the work of family caregivers
Provide working “credits” in the Social Security system for family caregivers who leave the workforce to provide full-time support and care for an ill, disabled or an elderly family member. This would recognize the unpaid work of family caregivers who quit their jobs to provide care. It would also strengthen caregivers' future retirement benefits and keep them out of poverty later in life – a common risk for middle-aged caregivers, particularly women, who take time out of the workforce to care for a parent.


Expand the Family and Medical Leave Act (FMLA)
Provide wage replacement at the federal level and incentives for states to develop paid family leave policies that include job protection for all workers who choose to take the leave. These changes would reduce costs to employers and assist employees who must take time off to care for a loved one but cannot afford to do so. In addition, the definition of eligible employees under FMLA should be expanded beyond the care of immediate family members to include care for siblings, in-laws and/or grandparents. Congress should also enact legislation requiring employers to provide at least seven paid sick days annually for employees. In the absence of paid leave, working caregivers are often forced to choose between economic security and providing essential care for elderly parents, spouses or other family members.


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The job of caring for ailing loved ones is often daunting. Now, many are asking...
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print storyHow Can We Help Our Nation's Caregivers?
By Gail Sheehy
Published: September 9, 2007
ON THE WEB
http://www.strengthforcaring.com
http://www.caregiver.org
http://www.caregiving.org
http://www.thefamilycaregiver.org
"It’s cancer.”

Those words from my husband’s oncologist plunged us into the whirlpool of fear, denial and confusion that suddenly drafts many in middle life into the wars against aging and physical decline. Within the first few days of sharing the news with stunned family members, Googling disease sites, tracking down doctors, comparing hospitals and growing dizzy from conflicting opinions, it began to dawn on me that my life had changed radically. I had a new role: “family caregiver.” It’s a job nobody applies for. You don’t expect it. You won’t be prepared.

When I assumed that role, I became part of an unpaid army of 44.5 million Americans who take care of adults. (An additional 6 million provide care to children under 18 with mental or developmental disabilities.) Today’s typical caregiver in the U.S. is a 46-year-old woman who holds down a paid job and spends 20 hours a week providing care for a sick or disabled parent, grandparent, spouse or child. The numbers will only grow.

My transition to caregiver began, as it does for many, when it came time for my husband to leave the hospital. A discharge planner may hand you a list of facilities that you have only a day or two to investigate. You learn that Medicare will decree whether or not a patient qualifies for “acute rehab,” the type necessary to restore functionality.

A doctor tipped me off that the patient’s fate often is determined by the number of steps he or she can take. Less than 12 steps, and the patient is consigned to “long-term care” in a nursing home, where little attention is paid to the possibility of ever becoming independent again. I will never forget sneaking into my husband’s hospital room at dawn on the day he was to be evaluated. He looked so weak and tired, with an elephantine trunk of oxygen and coils of IV tubing sprouting from his body. I had been working with him at the bedside to build strength. We had gotten as far as six steps.

“Boomers are shocked when they find out Medicare won’t pay for any long-term care for chronic illness,” says Gail Gibson Hunt, CEO and president of the National Alliance for Caregiving. At most, Medicare may provide a skilled home health aide for a few hours a day for a limited period of time.

Medicaid—intended as a safety net for specific low-income populations, including the disabled and children—will only reimburse people who have depleted their assets. In 2006, in an attempt to stanch the huge costs of health care, Congress made it harder to qualify for Medicaid’s long-term care benefit by factoring in the value of one’s home. “Our system is set up to encourage families to take on the full responsibility for long-term care and to discourage them from resorting to Medicaid,” notes Carol Levine, editor of the book Always on Call: When Illness Turns Families into Caregivers. “Only when you are totally desperate and have exhausted every resource will the government step in and help.”

Many caregivers are women and men in their mid-40s who are still building careers, investing for retirement and anticipating the freedom of an empty nest. Once they take over the caregiver role, they often experience sharp drops in income as a result of huge losses in wages and personal savings.

The killer statistic is this: Over the course of a lifetime, caregivers sacrifice an average of more than $500,000 in total income.

After my husband left the hospital, I hired a professional nurse to do the medical procedures at home, at $35 an hour. How many people can afford to hire paid caregivers?

A perfect storm is brewing. As boomers spend down funds on elder care that were earmarked for their own retirement, they are asking themselves: “Who will care for us?”

Action at the federal level has been minimal. Last year, Congress did pass the Lifespan Respite Care Act—which provides grants to states to develop local respite-care programs for caregivers desperate for a few hours’ break—but so far it has failed to appropriate any money. Meanwhile, some states and private companies are looking for solutions. Among them:

• California has created comprehensive paid family-leave insurance—the first such program in the nation. Most employees in the state can take up to six weeks’ leave to care for a seriously ill family member and receive 55% of wages. (In contrast, the federal Family Leave Act lets employees take time off without fear of losing their jobs—but without pay.)

• More states are looking for new ways to provide support. Between 2004 and 2006, dozens of states introduced a total of 78 caregiving bills—but only 16 survived the legislative process. The most popular proposals involved tax incentives for caregivers. This year, 12 states have been considering bills to expand family and medical-leave benefits.

• Portland, Ore., has pioneered the first education program for family members who are caring for older adults who have stroke, Alzheimer’s, Parkinson’s disease or similar long-term conditions. Called Powerful Tools for Caregivers, the six-week class teaches caregivers how to be effective in using community resources and managing their stress.

The Portland program—which has been replicated in more than 20 states through collaborations with community-based organizations like AARP chapters and Area Agencies on Aging—has reached 15,000 family caregivers. No one is allowed to make a financial profit from this service.

• Private companies have developed caregiver-friendly policies. Nike and Intel, for example, have adapted the Portland, Ore., course for their caregiving employees. EverCare sells employers the services of a “care manager” to walk their caregiving employees through the maze of options. Johnson & Johnson has created an online community that offers an array of resources for dealing with the bureaucracy and stress that caregivers face.

These are signs of progress. As baby boomers age, however, so much more needs to be done. We must design the system we want to grow old in.

Gail Sheehy is collecting stories from family caregivers for her next book. If you would like to share your story, please click here.

For more information about the Powerful Tools for Caregivers program, please contact powerfultools@aol.com.

Access the latest resources, connect with others and find support by becoming a part of the National Family Caregiver's Association (NFCA).

Download your free copy of CARE FOR THE FAMILY CAREGIVER: A Place to Start, produced by HIP Health Plan of New York in conjunction with the National Alliance for Caregiving.

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Chronic Illness Often a Taboo Subject: Survey
Just a third of U.S. adults feel comfortable discussing it.
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(SOURCE: Evercare, news release, Oct. 11, 2007)


THURSDAY, Oct. 11 (HealthDay News) -- Along with taboo topics such as politics and religion, many Americans are reluctant to discuss managing a chronic illness with family or friends, according to a new survey of more than 1,000 adults.

The survey, released Oct. 11, found that 82 percent of respondents said they knew someone with a chronic illness, but only 34 percent were likely to suggest ways for this person to better manage their care. That's about the same number who said they'd debate politics (37 percent) or religion (33 percent) with a loved one or friend.

Respondents were more likely to discourage friends or loved ones from buying the wrong house (65 percent), loan them a large amount of money (56 percent), advise them against taking a job they didn't think was right for the person (48 percent), and tell them their spouse was unfaithful (41 percent).

The survey was released by Evercare, a provider of health plans for people who have chronic illnesses, are older, or have disabilities.

The reasons why many Americans are reluctant to offer advice to chronically-ill friends or family include: They think the person has the situation under control (66 percent); they are not a health care professional (31 percent); they don't want to seem like a nag (31 percent) or rude (29 percent); they don't believe the person would listen to them (27 percent); or they didn't think the matter was that important (15 percent).

Other findings:

Twenty percent of respondents said their spouse was the easiest person to give advice to about health, followed by a child (20 percent), mother (13 percent), and father (5 percent).
Most respondents said they'd prefer to receive advice about managing a chronic illness from a health care professional (67 percent), followed by a spouse (10 percent) or parent (7 percent). Men were twice as likely as women (14 percent versus 7 percent) to have their spouse give them such advice.
Men have an easier time offering health advice to their spouse (28 percent) than women (19 percent). Women have an easier time offering health advice to their children (24 percent) than men (16 percent).
Thirty-four percent of respondents said the person closest to them with a chronic illness is a parent (34 percent), followed by another relative (16 percent), spouse (14 percent), friend (11 percent), sibling (8 percent), and child (6 percent).
Evercare offered tips on how to help family or friends with a chronic illness:

Talk to them in order to get an understanding of their goals. Get the conversation started by discussing events or activities they used to enjoy or future events they want to be part of, such as a family reunion. Once you understand their goals, you can help them achieve them along with health care providers, doctors or community service agencies.
Appoint an "ambassador" -- someone your friend or loved one feels comfortable talking with and respects enough to heed his or her advice. This person can help your friend or family member manage their condition.
Increase your comfort levels by educating yourself about the person's chronic illness. This will make you feel more comfortable speaking with them about the condition and reinforcing the advice the patient has received from their doctors.
By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.

More information

The American Psychological Association has more about coping with chronic illness.




HealthDayNews articles are derived from various sources and do not reflect federal policy. healthfinder.gov does not endorse opinions, products, or services that may appear in news stories. For more information on health topics in the news, visit the healthfinder.gov health library.

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