Federal Government and Caregivers

¶ … 1965, the Older Americans Act (OAA) established precedence for senior care in the United States. The OAA freed federal funding for not only seniors but also their caregivers, providing for such services as transportation and meals support. Since 1965, several adjustments and amendments have been made to the OAA. The most significant of the changes made to the OAA has been the National Family Caregiver Support Program, also known as Title IIIE of the OAA (NAC, 2012). The National Family Caregiver Support Program (NFCSP) was added as an addendum to the OAA in 2000. Of all the amendments to the OAA, the NFCSP is the one that has had the most direct and immediate impact on caregivers of elders -- the family members who care for their aging relatives. Unlike other provisions of the OAA, the NFCSP distinguishes itself by focusing on the caregivers and their needs, thereby initiating a revolution in geriatric care and the philosophy of geriatric care. The NFCSP provides federal grant money to the States, in proportion to their population of elderly persons. As such, the NFCSP allows the States to determine how to allocate funding and oversee the programs for elder care. Mainly because of the diversity of state interests, the NFCSP has been somewhat disjointed and fragmented, as well as underfunded. To promote funding for the NFCSP, the program needs to be revised in significant and meaningful ways.

The NFCSP provides grants to the states, which can in turn provide funding to caregivers directly as well as to state-run programs designed to alleviate the burden of elder care. A primary goal of the NFCSP is to enable family members to realistically care for their aging parents, grandparents, or other relatives rather than outsource caring to nursing homes or other assisted living facilities. Not only does the NFCSP help save taxpayer money by diverting funds to familial caregivers; the NFCSP also promotes responsible and humanitarian elder care. A large number of caregivers would gladly assume responsibility for their aging parents if they had the wherewithal to do so; the NFCSP allows home care to become more financially and pragmatically feasible. While the NFCSP offers the opportunity of home care to many families, the program has flaws that are continually being worked out year by year. The primary flaws identified in the literature evaluating the relative success of the NFCSP include the following.

First, the NFCSP is fragmented and irregular because it allows too much leeway for the states to decide how to allocate funding and how to determine eligibility for the program. Standardization of the NFCSP would help reduce the problems associated with program fragmentation. Second, the NFCSP lacks sufficient funds and has no accountable method of funding allocation. Third, the OAA does not hold any party responsible for program assessment. This means that NFCSP-funded programs are not monitored, and the funds could be wasted on programs and services that do not work. Fourth, the NFCSP is designed specifically to help caregivers, not the actual elders receiving the care. The NFCSP does not yet provide a standardized method of establishing training, education, and outreach services for the caregivers the program is designed to target. In other words, there is little in the way of support services, training, or education. Caregivers are left out in the cold, and the lack of support defeats the purpose of the program. Finally, the NFCSP needs to reach out more to the members of society who are in most need of financial assistance. The NFCSP currently lacks built-in provisions to ensure that the funding prioritizes low income families.

The NFCSP focuses on five basic service categories. Those five categories include information sharing, access to services, counseling/support groups/training, respite care, and supplemental services (Feinberg & Newman, 2004). Rather than dismantle the NFCSP, the federal government should work harder to strengthen these five initiatives. To do so, the federal government needs to partner more directly with state agencies and national health care organizations who can provide informed and evidence-based initiatives to build into future revisions of the NFCSP. Specific critiques of the NFCSP are as follows.

Standardization

Fragmentation has been identified as a primary problem with the NFCSP (Family Caregiver Alliance, 2003). The states determine which programs to fund, leading to great discrepancies of services and quality of care. Moreover, families who move frequently or who live in cross-border areas suffer from inconsistent application of the NFCSP. There is significant variability in eligibility requirements state-to-state, and also variation in processing periods for applying for funding. One suggestion to remedy the problem of fragmentation would be to reduce the red tape involved in applying for funding, making it easier for caregivers to understand eligibility requirements and to receive funding. There is also a lack of standardization in the programs available in each state. Some states might lack the leadership necessary to develop effective education and training programs for caregivers, causing great discrepancies in quality of elder care across the nation. States that do not pay adequate attention to program development are currently not being held accountable for their shortcomings. A standardized application of the NFCSP would ensure quality of care delivery.

Funding

As of 2011, the total funding for the NFCSP was listed at $153,911,000, and has remained relatively steady over the past several years. The actual federal funding is not the problem; the problem is allocation of funding at the state level. Similarly, funding fails to provide for the tremendous income and access disparities. "While the NFCSP fills a gap for low- to moderate-income family caregivers, the funding level of the National Family Caregiver Support Program is too low to meet the multifaceted needs of family caregivers," (Family Caregiver Alliance, 2003). To create more meaningful reform in elder care, the NFCSP needs to be more aggressive in centralizing its operations so that states cannot opt out of service provisions. There is as of yet no adequate control on state spending, and no official method of evaluation of data collection (Worthington, 2009). The potential for corruption and abuse remains a problem that can be easily addressed via methods such as program oversight.

Assessments

There has yet to be a clearly established, uniform set of guidelines or evaluation procedures that can ensure the NFCSP is working. Research elucidates the difficulties faced when trying to measure the impact of NFCSP services on families and ensure quality of NFCSP-funded programs (Family Caregiver Alliance, 2003). There are inadequate controls on state spending of NFCSP money, and no official methods of data collection that would inform changes to the program and its ancillary support services (Worthington, 2009). Future changes should focus more on outcomes, developing uniform standards across all states and a firm emphasis on evidence-based practices. The assessments need to keep in mind the target market for NFCSP services: the caregivers. Unlike other public health services, the NFCSP is caregiver-based, and as such, may require a different set of parameters for program evaluation.

Caregiver Support

Caregiver support is the primary purpose of the NFCSP and yet ironically remains the area that suffers the most from inadequate program management. The Administration on Aging (2014) points out that almost half of all caregivers are over the age 50, making them more vulnerable to a decline in their own health and therefore increasingly in need of robust services that help them care for their aging parents or loved ones. The NFCSP has been revolutionary in offering caregivers of all ages the opportunity to acquire items and services needed for caregiving, whether those items be food and nutritional supplies or blankets. "Family caregivers can benefit from receiving everything from incontinence supplies and nutrition supplements to microwave ovens and washing machines that make daily tasks and routines a little easier," (Worthington, 2009, p. 1). To reduce fragmentation in the program services, and to increase quality of care, federal and state programs need to b target the family caregiver," (Family Caregiver Alliance, 2003). States differ on their approach and philosophy, with many failing to recognize that the target audience is the caregiver (Feinberg & Newman, 2004). Full reform of the NFCSP would require state directors and local health care leaders to understand that the NFCSP is designed to help caregivers.

Policy Improvements

The NFCSP rests on firm foundations. However, continual improvements can help to achieve the ultimate goals of the policy. The first policy improvement needs to reduce the inconsistency and fragmentation of the current NFCSP. States do need to determine the specific needs of their own populations, and therefore, allowing states to allocate funding to localized programs makes sense. To reduce fragmentation, the federal government can employ an Ombudsman (NAC, 2012). Another means of reducing fragmentation would be to require standardized assessments and follow-up measurements. Likewise, Worthington (2009) points out the inadequate controls on spending at the state level. There has yet to be an official method of evaluation or data collection that can reduce fragmentation while simultaneously increasing accountability.

Family caregivers are the target market for the NFCSP and as such, need to be focused on as the recipients of care and funding. It has been difficult to measure the impact of NFCSP services on families and ensure quality of the programs" (Family Caregiver Alliance, 2003). The NFCSP managers need to focus on program outcomes, evolving uniform standards across all states that are based on evidence-based practices and not on political whims. An Ombudsman program would help provide oversight to ensure responsible state spending (NAC, 2012). Perhaps the biggest problem with the NFCSP has been the lack of support and assistance to the caregivers, who often "face health risks, emotional strain, mental health problems, workplace issues, and financial insecurity," (Feinberg & Newman, 2004, p. 760). The goal of the NFCSP is to facilitate home care for elders, not to burden caregivers. Eligibility requirements for the NFCSP are notoriously strict, too (Paying for Senior Care, 2016). The primary caregiver needs to prove service at 40 care hours per week in some cases, and cannot be a recipient of respite care services from other organizations including the VA -- a provision that is woefully unfair especially for those in most need of NFCSP funding. If the caregiver also happens to be a nurse or home health worker, there could also be a conflict whereby funding is not granted (Paying for Senior Care, 2016). Such unnecessary impediments to eligibility need to be properly removed.