In an earlier article I discussed the role of local Area Agencies on Aging (AAAs) in connecting caregivers to community resources. In Washington State, one of these resources is the Family Caregiver Support Program (FCSP) that, since its creation in 2000, has provided crucial support that caregivers need to remain effective and allow family members to remain at home even longer.
According to a 2013 Pew Research Center report, 39 percent of U.S. adults are caregivers, and they care for their spouses, their parents, and their friends. They are unpaid and provide an invaluable service of allowing their loved ones to remain at home. This benefits society as a whole as the costs for care in an expensive nursing home or assisted living community would not have to come from public funding sources such as Medicaid. However, this savings can come at the cost of the caregiver’s health; the financial, physical, and emotional tolls that caregivers bear are tremendous.
Fortunately, every state receives funding to support caregivers, though the availability does vary. Here in Washington, the state legislature recognizes the value of caregiving—which the AARP Public Policy Institute cites as $10.6 billion dollars annually with more than 850,000 unpaid family members providing care—and has committed to providing support through efforts such as the Family Caregiver Support Program (FCSP). This program is administered by the Washington State Department of Social and Health Services (DSHS) and is coordinated through the local AAA. FCSP owes its creation to former State Representative Carolyn Edmonds who proposed the legislation in 2000 and has the good fortune to receive unanimous support from both major political parties.
There is so much research about the strain on caregivers, says Hilarie Hauptman, kinship and family caregiver program manager with DSHS’s Aging and Long-Term Support Administration (ALTSA). Dana Allard-Webb, a program manager monitoring special projects at ALTSA, explains that people forget about caring for themselves, and research shows that about 80 percent of caregivers in the FCSP show indications of clinical depression. She adds that “a lot of people don’t think of themselves as caregivers,” and they say instead that “‘I am just a spouse.’” According to the January 2013 Family Caregiver Support Program A Report on the FY 2012 Expansion, 36 percent of caregivers have provided care for five years and 55 percent are 61 years or older.
FSCP provides a variety of resources, including caregiving screening and assessments of their current situation, facilities access to supportive services, and helps with creating a care plan. The Tailored Caregiver Assessment and Referral (TCARE®), adopted in 2009 at the behest of the state legislature, provides an evidence-based caregiver assessment tool. Hauptman explains that this centralized web-based system allows us to, “demonstrate that we are making a difference.” According to an FCSP Report, the services provided allows a full 40 percent of those who would otherwise have been placed in long-term care—paid for by Medicaid—-to reside in their home. Furthermore, this allows the care recipient and the family to remain in control of their assets, rather than giving them up in order to receive public funding through programs like Medicaid.
TCARE® focuses less on what caregivers do and more on how they are feel about what they do, Hauptman explains, which helps identify those who need support. Allard-Webb adds that most people are shocked when someone asks them, “How are you feeling?” Their response allows the family caregiver specialists to identify those at a risk for depression and poor health. From there, the specialists tailor care to meet the caregiver’s needs, such as providing training or suggesting in-home care services. Our goal is to develop and nurture a relationship with caregivers and problem-solve their issues, Hauptman says.
Despite the value this program offers caregivers, Hauptman estimates that only one percent of all caregivers–out of a total of 850,000 in WA, according to AARP–make use of the services through FSCP. One of the biggest factors for this low number is the cultural norms surrounding self-reliance. “Asking for help is so difficult through life” and to overcome this obstacle, we work to frame our program as a gift for caregivers, Hauptman says. To identify the resources available to support their responsibilities, caregivers are advised to contact their local AAA to discuss their situation and complete a Personal Caregiver Survey. Most caregivers receive a six-month screening and subsequent follow-ups at least every six months.
For those outside Washington, the local AAA is the best place to start when looking for supportive services. Because all discussions with AAA staff are confidential, caregivers can safely disclose their situation and share their feelings. Hauptman and Allard-Webb encourage caregivers to be proactive in reaching out to programs in their area, so they can receive support and training that will improve both the quality of the care they provide and promote their own well-being. Additionally, the TCARE survey administered by the FCSP is available online, and while its effectiveness is lessened when not used in conjunction with the TCARE program, caregivers can get a better sense of where they could benefit from help and if support services are available.
For states without a robust caregiving program, Hauptman explains that it’s important to come out as a caregiver and to educate legislators about the value of funding support programs. The Family Caregivers are Wired for Health report states that “as the U.S. population ages, and medical advances save and extend more lives, caregiving is likely to become more a common role than it has ever been before,” which means it is more important than ever to advocate for services that will support future caregivers.
To locate your local Area Agency on Aging and Family Caregiver Support Program, you can contact the Eldercare Locator at 1-800-677-1116 or www.eldercare.gov.
Andrea Watts is content writer for SeniorHomes.com, and in addition to covering senior living, she also writes on sustainable forestry and agriculture issues. Her writings have appeared in publications that include TimberWest, The Forestry Source and Acres U.S.A.