The Family and Informal Caregiver Support Program (FICSP) was developed by the Weinberg Foundation for innovative and evidence-based community projects that help family and friends care for chronically ill or disabled low and moderate income older adults. The grants were made to nonprofits in the states of California, Florida, Illinois, Indiana, Maine, New Hampshire, New York, Pennsylvania, and Texas.
The Foundation is very excited to provide a forum for projects supporting family and informal caregivers to older adults. Forum participants can share best practices, innovative ideas, and ask questions of the FICSP’s funded projects regarding their work and findings.
It is an undeniable fact that most frail older adults are cared for by family, friends, and other non-professionals. It is a difficult challenge for many. For most there is no alternative. As a society, we simply do not have the resources to provide professional caregivers and support services to everyone who needs assistance. But we do have community assets which can be used in more creative ways. With this 3-year funding initiative which began in September 2009, the Harry and Jeanette Weinberg Foundation will help community partnerships develop innovative ways to support these devoted caregivers.
There are ever-increasing numbers of older adults who need assistance from formal and informal caregivers. This increase is the result of longer life expectancies and greatly improved health care techniques and technologies, among other things. However, for some older adults there is an expanding need for support resulting from greater financial need, lack of access to health care, unexpected health costs, and isolation from family members. Many need assistance with the basic necessities of life such as safe and affordable housing, community-based long-term care, sufficient nutrition and health care, transportation and community mobility, increased social connections, and opportunities to become more active in their communities. Compounding this challenge, many functionally impaired adults with moderate incomes do not qualify for government benefits, although they encounter severe difficulty in paying for needed services. Much of the assistance for older adults is provided by family and informal caregivers. According to the 2003 National Alliance for Caregiving/AARP National Caregiver Survey (www.aarp.org/research/housing-mobility/caregiving/), “at least 30million adults provide ongoing care that is critical in helping friends and loved ones with debilitating illnesses remain in their homes and other community settings. It is estimated that at least 75% of all care received by older adults in the United States is provided by family members and friends, and many do not consider themselves caregivers.” According to another recent survey conducted by the National Alliance for Caregiving (www.caregiving.org), a family’s “...out-of-pocket financial costs to care for an aging parent or spouse average about $5,500 a year. The impact of caregiving for an older family member or friend may lead to increased financial, physical, and emotional strain for the caregivers. However, family and informal caregivers receive little training or ongoing support for their evolving role as caregivers, and many do not know how and where to go for help or information.”
Research shows that caregivers themselves miss a great deal of work, and can feel overwhelmed and depressed. In addition, three of the greatest needs expressed by family caregivers are assistance with obtaining accurate information, transportation and community mobility, and short-term respite care. Long distance caregivers face an additional burden. According to the Caregiving in Rural America 2006 report issued by Easter Seals and the National Alliance for Caregiving, “family caregivers look to the internet and doctors for information; for support, they most often turn to prayer, friends, and relatives.”
Government has begun to move on issues of support for caregivers. In 2000, Congress enacted, as part of the Older Americans Act, the National Family Caregiver Support Program. In addition, individual states offer support to varying degrees. One of the more important studies in this area, undertaken by the Family Caregiver Alliance’s National Center on Caregiving, with support from the U.S. Administration on Aging, is The State of the States in Family Caregiver Support: A 50-State Study, www.caregiver.org. The disparate and often fragmented network of aging services needs to provide support and guidance not only for the older adult, but also for family and informal caregivers. As many models of care can meet the complex and diverse needs of family and informal caregivers and older adults in a diverse society, each community must develop a network of supportive and unique programs while building on the experiences and knowledge of other community models. Supportive programs that enhance neighborhood connections and provide additional support add to the effectiveness of the caring network, and they also help to relieve the stress on families and other informal caregivers.
The best solutions for improving long-term care and supportive services for older adults living in the community must include their family and informal caregivers, as well as the active engagement of older adults and other community members and assets. The primary goal of the Family and Informal Caregiver Support Program is to increase support for family and informal caregivers who assist older adults living in the community.
The 14 projects included in the FICSP are not-for-profit organizations or governmental agencies or entities. Diversity is a guiding principle of this program. Many of the projects focus on inclusion of underserved or underrepresented racial groups. They represent both urban and rural areas and serve a geographic area with at least fifteen percent (15%) of its residents age 55 or older. The majority of the older adults and their caregivers being served by the projects have a household income less than the median income in the applicable community.
The FICSP provides support to innovative and/or evidence-based community initiatives or projects that help family and informal caregivers assist low and moderate income, community-dwelling older adults in maintaining their independence and quality of life. Innovation refers to new or expanded approaches to supporting family and informal caregivers and, if appropriate, the integration of new technologies. Innovation may differ from community to community.
Projects are providing direct support services that impact the lives of family and informal caregivers (including long-distance caregivers) as part of community partnerships who, in turn, are providing a comprehensive array of programs and services to older adults. These partnerships provide multi-faceted community referral and information networks.
Each project is required to develop and implement a strategic plan to be sustainable after Foundation funding is completed.
Evaluation is very important to the Family and Informal Caregiver Support Program. The Foundation is particularly interested in hard evidence that indicates that the approaches of these projects take actually relieve stress on families and other informal caregivers and add to the effectiveness of the caring network. Each of the projects is conducting their own internal evaluation. However, each internal evaluation is coordinated with an overall (external) evaluation of the 14 projects has been funded by the Foundation.
AgeOptions (Oak Park, IL) will receive a grant totaling $515,357 for Caring Together, Living Better. Using an asset based approach the program will work directly with churches and other grassroots organizations that serve poor older adults living in Chicago’s South Suburbs. Caregivers will receive help with respite care, transportation, and access to benefits such as Food Stamps. www.ageoptions.org
|Jonathan Lavinfirstname.lastname@example.org||Chief Executive Officer|
|Sarah Steinemail@example.com||Countywide Caregiver Coordinator|
|Katrina Garrettfirstname.lastname@example.org||Caregiver Community Organizing Specialist|
Alzheimer’s Disease and Related Disorders Association of Southern California (Los Angeles, CA) will receive a grant of $750,000 for the Asian and Pacific Islander Dementia Care Network. Using linguistically and culturally fluent community care managers, this program will provide services to caregivers directly through four Asian cultural and linguistic organizations to provide respite care and legal and financial counseling related to caregiving. www.alz.org
|Debra Cherryemail@example.com||Executive Vice President|
|Susan Howlandfirstname.lastname@example.org||Director of Education|
The Asian Community Center (Sacramento Valley, CA) will receive a grant totaling $706,659 for the Sacramento Asian Pacific Islander Dementia Care Network. The project will provide direct assistance to caregivers from Sacramento’s very diverse Asian communities including Thai, Filipino, Hmong, Korean, Samoan, Tongan, and Native Hawaiian with services such as caregiver education, drop-in respite care, and in-home nursing services. The project will also educate mainstream service providers on how to work with a linguistically and culturally diverse population. www.accsv.org
|Donna L. Yeeemail@example.com||Chief Executive Officer|
Eastern Area Agency on Aging (Bangor, ME) will receive a grant of $650,000 to support the Rural Community Based Caregiver Network and Support System. The program will offer in-home assessment and volunteer support services, caregiver counseling at the point of hospital discharge, and training for caregivers living in this very rural area of Northern New England. www.eaaa.org
|Noelle Merrillfirstname.lastname@example.org||Executive Director|
Isabella Geriatric Center, Upper Manhattan (New York City, NY) will receive a grant of $714,900 to support the Caregiver Ombudsman Outreach Project. The project will permit specialists to work with family and informal caregivers by offering respite care, caregiver retreats, and training sessions. www.isabella.org
|Mark J. Katoremail@example.com||President and Chief Executive Officer|
Jewish Family and Children’s Service of Sarasota-Manatee (Sarasota, FL) will receive a grant of $708,229 for its Caregivers Accessing Resources and Essential Services (CARES) project. CARES introduces a widely used approach to planning and delivering services to children, known as Wraparound Services, to older adult caregivers. Through this project, caregivers will receive respite care and homemaker services from a wide variety of partners, agencies, and local volunteers. www.jfcs-cares.org
|Rose Chapmanfirstname.lastname@example.org||President and Chief Executive Officer|
|Pamela Baronemail@example.com||Director, Senior Services|
Jewish Healthcare Foundation (Pittsburgh, PA) will receive a $300,000 grant for Caregiver Champions, a unique grassroots program to support and empower the caregivers of frail, older adults by helping them to better care for themselves, reduce stress and gain access to important caregiving information, tools and resources. The initiative is open to people of all faiths.
There are two ways to get involved. The first way to get involved is by becoming a Caregiver Champion. The Foundation is currently recruiting experienced family and informal caregivers to become a resource for information and support within their own communities. The second way to get involved is by attending Learning Circles, six, free, two-hour sessions where topic experts provide informal learning in a casual setting. Learning Circles are facilitated by trained Caregiver Champion. Caregivers will learn about several topics including recognizing burnout, asking for help, advocating for loved ones and navigating the human services system. www.caregiverchampions.org | www.jhf.org
|Pam Vinglefirstname.lastname@example.org||Project Manager|
|Beth Polonchakemail@example.com||Project Coordinator|
Monadnock Collaborative (Keene, NH) will receive a grant of $650,000 for its Transitions in Caring initiative. This program links caregiver support programs in four rural counties of Western New Hampshire and features intensive caregiver training and respite care for the caregiver and care-recipient. The program will also provide in-home volunteers to help with homemaking and chore services. www.nhcaregiverconnections.org
|Melinda Feola-Maharfirstname.lastname@example.org||Executive Director|
|Jennifer Seheremail@example.com||Program Director|
Parker Jewish Institute for Health Care and Rehabilitation (New Hyde Park, NY) will receive a grant of $300,000 to support Willing Hearts, Helpful Hands. The project will recruit, train, and deploy volunteer chore service and respite care workers in Eastern Queens (Hyde Park) and Western Long Island. The volunteers will be available to support family and informal caregivers in an emergency or recurring basis. www.parkerinstitute.org
|Lorraine Breuerfirstname.lastname@example.org||Vice President, Research|
REAL Services (South Bend IN) will receive a grant of $780,000 for the Caregiver Connection project, a community-based program featuring caregiver training, case management, and access to consumer directed care. The key to this project is participation in its home repair and modification programs. The project will serve a community of older adults living in sub-standard housing. www.realservices.org
|Rebecca Zaseckemail@example.com||President and Chief Executive Officer|
|Christopher Nannifirstname.lastname@example.org||Vice President, Programmig|
SAGE Caring And Preparing (SAGECAP) (New York City, NY) will receive a grant of $660,000 for the Life Choices I Care/My Care program which recognizes that caregivers and care recipients in this community may rely solely on non-family acquaintances or friends to provide their care. The project will offer caregiver training supplemented by legal, financial, and personal care planning assistance for both the caregiver and care receiver. www.sageusa.org
|Suzy Ritholzemail@example.com||Director of Social Services|
|Michelle Laguerre LMSWfirstname.lastname@example.org||SAGECAP Program Manager|
Share the Care (Orlando, FL) will receive a grant of $309,000 for Caregiver Central, a web-based caregiving needs assessment, enabling the caregiver to assess the situation, with a family navigator if desired, and proceed with a specifically-designed cascade of options including information, training, personal support, direct service connection and continuing needs assessment. Caregiver Central will be open to all caregivers of older adults in low-income African American and Latino communities in Metropolitan Orlando. Highlighted by the concept of a Caregiver College, a welcoming information and support hub, homelike yet technologically advanced, with friendly onsite operations assistance as well as home and offsite connection capability. www.helpforcaregivers.org
|Mary Ellen Grantemail@example.com||Executive Director|
Southern Caregiver Resource Center (San Diego, CA) will receive a grant of $540,000 for the Partners In Caring Collaboration. The program will provide services for caregivers in the South Bay area, the ethnically diverse communities south of San Diego along the Mexican border. Services provided include case management, caregiver classes, respite care, support groups, legal consultations, home modifications, counseling, and an intergenerational computer lab for often mono-lingual caregivers who have no current access to services. Each community in the area will have its own care-manager located in the community to coordinate these services and training opportunities. www.caregivercenter.org
|Lori Van Tilburgfirstname.lastname@example.org||Executive Director|
Wellmed Charitable Foundation (San Antonio, TX) will receive a grant of $600,000 for the Alamo Caregiver Tele-Connection Collaboration, a mix of services and supports available by telephone, on the web, or in person for low-income older adults in the San Antonio area. Modeled on Montreal’s successful Telehelp Program caregivers will receive bi-lingual and bi-cultural training in respite care, in-home assessment, and benefits screening for the care-receiver and the care-recipient. www.wellmedcharitablefoundation.org
|Carol Zernialemail@example.com||Executive Director|