National Family Caregiver Support Act & Social Policy

NFCSA & background

In the year 2000, the Older Americans Act (OAA), originally enacted in 1965, was amended, providing pathways of support to family caregivers of the elderly; as well as elderly caregivers.  This public Law (106-501) is referred to as the Older Americans Act Amendments of 2000. During this phase of development, the 106^th Congress of the United States of America titled the National Family Caregiver Support Act (NFCSA) under Title III (part E) of the Older Americans Act (2000; PL. 106-501). This amendment provided grant funding to state level area agencies on aging (AAA), or related contracted agencies, to provide multi-faceted support for family caregivers of elderly persons and elderly persons themselves who are caregivers.  People 18 years of age and older who provide caregiving to elderly 60 years and older; or individuals with Alzheimer’s Disease or related dementia of any age; and grandparents or elderly relative caregivers of children 18 and under or adults with disabilities (aged 18-59) are eligible for NFCSA services (Link, 2015). Information, access, counseling, group support, training & problem resolution (as related to caregiving) would be offered or contracted through these state level agencies; themselves products of the Older Americans Act’s framework (OAA, 2000; PL. 106-501). Additionally, family respite care and day care services for adults would be offered as respite for caregivers (OAA, 2000; PL. 106-501).

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Elderly people are defined as aged 60 and above in the NFCSA (OAA, 2000; PL. 106-501). People with Alzheimer’s disease and other related brain dysfunctions caregivers are considered eligible as well. After the 2016 re-authorization of the OAA (2016; PL. 114-144), someone 55 years of age or older (as opposed to the original age of 60), that is a primary caregiver of children 18 and under; or individuals with disabilities up to age 59, may be considered an older relative caregiver; meeting eligibility requirements for services. Grandparents and elderly caregivers of children under 18, are limited in support as compared to what might be termed the primary target group (OAA, 2016; PL. 114-144). Only 10 percent of the total funding available for states, which includes their individual 25% match to the federal 75% of funding, is allocated for use in supporting the elderly who are themselves caregivers of children under 18 (OAA, 2016; PL. 106-501). 

Federal funding is dispersed based upon population ages 70 and older within each state (Staicovici, 2004). The inclusion criteria of the NFCSA was more recently amended, in the Older Americans Act Reauthorization Act of 2016 (PL. 114-144), to assist in situations where older Americans (55 plus) are primary caregivers of specified children and/or adult children with disabilities (OAA, 2016; PL. 114-144). People of all income groups are eligible but priority is geared towards lower income aggregates and older relative caregivers of people with developmental disabilities and mental-retardation (Feinberg & Newman, 2006). In some states peoples 60 and older, whose caregivers are seeking financial assistance, need to exhibit marked difficulty in performing activities of daily living (Whittier et al., 2005).  The variance of services and supports of NFCSA at the state and local level is high (Whittier et al., 2005), and the continued encouragement of this system level of discretion in policy application is recognized as a strength and goal for future NFCSA direction (Link, 2015). This value is reflected in person-centered terminology (Link, 2015) and is akin to consumer direction values as well (Feinberg & Newman, 2006).  This same strength and flexibility may hinder rather than encourage service provision if more value is not placed on stringent, evidence-based assessment of service delivery and consumer need (Whittier et al. 2005). Fortunately, this focus on assessment is recognized as a key value moving forward as well (Link, 2015).

Caregiver feminine

Long-term care for adults in the United States is performed primarily by women who are unpaid (Feinberg & Newman, 2006). Further, friends and family provide most of this care and there has been a shift in favor towards home and community-based care (HCBC) generally, as opposed to institutional care.  Estimates show that 34 million people provide this informal type of care and that the majority are working themselves (Giunta, 2010). The costs associated annually are staggering, estimated at 375 billion dollars (Giunta, 2010).  Though family caregiving has long been a mode of operation here in the United States and historically abroad the impact on caregivers is immense (Whittier et al., 2005; Feinberg & Newman, 2006; Giunta, 2010). Quality of life is significantly impacted physically, mentally and socially in addition to the financial burden (Whittier et al. 2005). There is hope in the NFCSA for relieving this stress and burden (Giunta, 2010). Women, who are over-represented in this aggregate, are at higher risks themselves for subsequent poverty and need of public assistance because of their caregiving (Feinberg & Newman, 2006).  Though there is a sense of satisfaction in providing such service among all caretakers (Feinberg & Newman, 2006), the stress associated with the activity has been shown to be made less intense by programs like the NFCSA.  Respite care, in particular is helpful in relieving the caregiver stress; equipping caregivers also, to offer improved personal resource in their caregiving (Whittier et al., 2005).

Value in words & in action

It is clear in the in the writing of the National Family Caregiver Support Act that elderly people, their caregivers, and caregivers who are themselves elderly, are all valued (OAA, 2000). The extent to which this value is actualized and deployed into service provision is debatable; Whittier, Scharlach & Dal Santo (2005) have noted that the financial assistance provided under the NFCSA is symbolic, rather than significant, when compared to other countries efforts.  President Barack Obama, whose re-authorization of the OAA in 2016 was essential in securing funding through 2019 (Yao, 2016), declared November, 2012, as the National Family Caregivers Month (Proclamation No. 8900). The NFCSA has secured 180.6 million dollars for fiscal year 2018 and appropriated 181.2 million for 2019 (National Council on Aging, 2018). This notable, but meager funding of the NFCSA is in line with general patterns of OAA funding itself; therefor the vehicle (The OAA) for this adaptive and flexible program (NFCSA) is potentially limiting its growth (Feinberg & Newman, 2006). If funding is indicative of the value placed on caregiver support, specifically respite care, the NFCSA is in competition and cooperation with other streams of support like Medicaid waivers, The Lifespan Respite Care Act (2006; PL. 109-442), other state-based programs, and private community organizations offer varying support (Feinberg & Newman, 2006).

Policy Organic; multiple influences

 The interplay of social policy agents is at work on many system levels in regards to the NFCSA. The OAA is a time tested and key piece of law that enabled the development of the NFCSA and well-developed localized infrastructure of aging community resource (Putnam, 2017). Devoluting so much responsibility and flexibility to the state units on aging and the area agencies on aging is a product of a generative and well written original OAA document, in addition to years of work and re-calibration on multiple system levels. The intersection of politics, state and local organization, and federal direction is highlighted in the NFCSA framework. The Lifespan Respite Care Act (2006), funded through The Public Health Service Act (42 U.S.C; Title XXIX) framework, is an act that makes up part of that competing and cooperative effort to provide respite care to caregivers. This respite focused act was initially started by a proposed act titled The Ronald Reagan Alzheimers Breakthrough Act (H.R. 1262) that was appropriated and deployed in the Lifespan Respite Care Act of 2006. President Obama’s declaration and this respite care development both signify and highlight the intersection of political discourse in social policy. Locally, contractors and caregivers on the ground level work with city, county, and state level area aging representatives to give feedback and important information to improve and define what works (Giunta, 2010).  This interaction of different interests and organizations and governmental bodies is well accounted for in theoretical models like implementation theory. This type of theory attempts to appreciate the influence of multiple variables that co-influence outcomes (Giunta, 2010). Still, the complexities and manifold variables of social policy in action, particularly when so much agency is granted state level authorities, can be difficult to analyze (Giunta, 2010).

 Nancy Giunta (2010) has offered a comprehensive theoretical study about NFCSA implementation at the state level that attempted to account for these interwoven and difficult to measure variables. Though the study offered only some quantifiable data of significance, the methodology and design of the instrument is purposed here; as are some of the findings. Demographic, historical, political, and organizational axis were identified for bi-variate and multi-variate analysis.  Demographic variables included age, race, ethnicity, socio-economic conditions, population density; historical data focused on public support for caregiving; political variables focused on how U.S. Supreme Court action and subsequent policy revision in relation to the Olmstead V. L.C. decision (1999) influenced implementation; as well as the partisan makeup of respective state governments; and finally, organizational factors concerned with access, division of funding among providers, assessment, and caregiver status as primary recipient of service were designated (Giunta, 2010). The ability of modern technology and computing to cross reference and compute such data is encouraging and inspiring when considering the assessment and improving of social policy service delivery. From the Giunta (2010) study only some significant results emerged. The NFCSA appears to be more effective in providing for counseling, support groups, and training when the caregivers had been recognized within the state, prior to the NFSCA, as being recipients in need of service; recipients of care at all even. The idea of caring for the caregiver, the caregiver being recognized as a person who also needs care and support seems to be of significance in implementing policies like the NFCSA effectively (Giunta, 2010). The importance of public awareness, cultural and linguistic considerations, and power dynamics were suggested for further review in policy evaluation by Guinta (2010).

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In the NFSCA informal caregivers and family caregivers both are recognized now as consumers (Feinberg & Newman, 2006). In this more holistic view historical support has changed what it values (Feinberg & Newman, 2006).  The shifting of value towards more diverse living and caregiving environments, has co-occurred with a more person-centered, evidence-based policy (Link, 2015). Placing power of choice and influence more within the control of caregivers and those they care for is recognized as consumer direction; a philosophy that holds promise for the future of adaptable and effective policy (Feinberg & Newman, 2006).  The NFCSA funding that has been provided has supported a majority of recipients surveyed in making care easier, more effective, and more feasible as time went on (Link, 2015).

Diversity within & about the NFCSA

The potential for growth within the NFSCA and the OAA itself is immense and cause for hope in the future (Putnam, 2017; Link, 2017). Eligibility requirements for the OAA hinge around the age of the individual and this is argued by Michelle Putnam (2017) to be a rallying point for further service provision that is more inclusive. Where Putnam is concerned primarily with the inclusion of more people into all OAA services by use of age as eligibility, rather than type of disability and the age of onset, or other variable criteria (Putnam, 2017), participation in the NFCSA in particular, is affected by a group of diversity-related factors.   Public awareness of the pressing need for caregiver support is noted as being key to effective service allocation (Guinta, 2010). The nature of caregiving as a feminized, and private affair has contributed to its lack of exposure in the public eye (Staicovici, 2004). This is despite the long historical understanding of family caregiving as a primary mode of social behavior both cross-culturally and in written law (Staicovici, 2004; Stern & Axinn, 2018).  The English poor laws of 1601, for example, emphasize the responsibility of a family to provide such types of care for frail and other people incapable of performing work (Stern & Axinn, 2018).  Caregivers do not identify as well in environments where there has been less awareness, and many caregivers do not think of themselves as being a part of a population that would even be eligible for support (Guinta, 2010).  Feinberg &. Newman (2006) argue that this shift in focus of service provision from the acute level of person afflicted toward a more holistic focus on supporting structures that assist the aged is, in fact, a paradigm shift. Cultural differences and linguistic barriers are significant factors influencing access and use of NFCSA services (Giunta, 2010). The 2016 OAA re-authorization has highlighted a need to gather information on better supporting Holocaust survivors for example (ACL, 2018). This group has specific attributes which hinder their access and use of available services. The continued focus on consumer driven, person-centeredness is the focus moving forward for the NFCSA (Link, 2015). Geo-political diversity concerns would include differences in service provision to Indian Nations & Tribes within the United States, who are included in the basic structure of the NFCSA (2000); and might highlight the treatment of U.S. territories as they receive less funding (OAA, 2000).

Policy Organic; living & breathing

 The NFCSA is a policy that represented a shift in thinking about how we support our elderly because it focuses so clearly on those who provide the care outside of institutions (Link, 2015). The flexibility inherent in the policy for state and local development and implementation is noted as being contemporaneous as well (Link, 2015). Valuing caregivers, person-centered policy, and consumer direction in policy in a way that is adaptable like the NFCSA does, is reflective of current directions in policy.  Still, noting that older policies like the OAA paved the way for development like the NFCSA is important too. The NFCSA has historical roots and is the product of many concerned parties. Political divisions seem less significant in relation to this policy and part of this may be because of the significant power inherent in the substantial population of U.S. aging’s political influence (Staicovici, 2004). As a mechanism of political discourse, interest in serving caregivers has been noted here by both Democrats and Republicans. The NFCSA makes clear that it expects states to assess their own program provision in addition to their active role in determining what services to provide and to whom (OAA, 2000). Some states have been more cautious than others in NFCSA deployment, requiring more of family caregivers in establishing their eligibility; including criminal background checks (Feinberg & Newman, 2006).

The difficulty in assessing this type of program is apparent as Giunta (2010) notes well. This is reflective of the value place in general on person-centered, but evidence-based practice (Link, 2015). Fortunately, well developed AAA’s and a structure of active, passionate providers (who respond to surveys and allocate time to cooperate); empowered by historical policy development like the OAA of 1965; are well equipped to continue the work toward these important and hopeful value developments in policy.

References

• Feinberg, L. F., & Newman, S. L. (2006). Preliminary experiences of the states in implementing the National Family Caregiver Support Program: a 50-State Study. Journal of Aging & Social Policy, 18(3/4), 95–113.  doi: https://doi-org.brockport.idm.oclc.org/10.1300/J031v18n03̱07
• Giunta, N. (2010). The National Family Caregiver Support Program: a multivariate examination of state-level implementation. Journal of Aging & Social Policy, 22(3), 249–266.  doi: https://doi-org.brockport.idm.oclc.org/10.1080/08959420.2010.485523
• Lifespan Respite Care Act Of 2006, PL 109–442. (2006). Retrieved from Thomson Reuters Westlaw Database (2018).
• Link, G. (2015). The Administration for Community Living: programs and initiatives providing family caregiver support. Generations, 39(4), 57–63.  doi: https://brockport.idm.oclc.org/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=112205853&site=ehost-live
• National Council On Aging. (2018). Aging program funding. Retrieved from https://www.ncoa.org/wp-content/uploads/FY19-LHE-final.pdf
• Obama, B. (2012). Proclamation 8900–National Family Caregivers Month, 2012. Daily Compilation of Presidential Documents, 1–2. doi: https://brockport.idm.oclc.org/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=83520383&site=ehost-live
• Older Americans Act Amendments Of 2000, PL 106–501, (2000).  Retrieved from Thomson Reuters Westlaw Database (2018).
• Older Americans Act Reauthorization Act Of 2016, PL 114-144. (2016).  Retrieved from Thomson Reuters Westlaw Database (2018).
• Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581 (1999). Retrieved from Thomson Reuters Westlaw Database (2018).
• Public Health Service Act 42 USCA § 20 (2006).  Retrieved from Thomson Reuters Westlaw Database (2018). 
• Putnam, M. (2017). Extending the promise of the Older Americans Act to persons aging with long-term disability. Research on Aging, 39(6), 799–820.  doi: https://doi-org.brockport.idm.oclc.org/10.1177/0164027516681052
• Ronald Reagan Alzheimer’s Breakthrough Act of 2005. H.R. 1262, 109^th Cong. (2005). Retrieved from https://www.govtrack.us/congress/bills/109/hr1262
• Staicovici, S. (2004). Respite care for all family caregivers: the Lifespan Respite Care Act. Journal of Contemporary Health Law & Policy, 20(1), 243-272.  doi: https://scholarship.law.edu/cgi/viewcontent.cgi?article=1177&context=jchlp
• Stern, M. J. & Axinn, J. (2018). Introduction: how to think about social welfare’s past (and present). In Stern, M. J. & Axinn, J., Social welfare: A history of the American response to need (pp. 1-14). New York, NY: Pearson.
• Whittier, S., Scharlach, A., & Dal Santo, T. S. (2005). Availability of caregiver support services: implications for implementation of the National Family Caregiver Support Program. Journal of Aging & Social Policy, 17(1), 45–62.  doi: https://doi-org.brockport.idm.oclc.org/10.1300/J031v17n01pass:[_]03
• Yao, T. (2016). Key changes of the Older Americans Act Reauthorization Act of 2016. Bifocal, 37(6), 120–121. doi: https://brockport.idm.oclc.org/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=118132423&site=ehost-live