Process Evaluation of the Older Americans Act Title III-E National 

Family Caregiver Support Program: Final Report Executive Summary

The Lewin Group | www.lewin.com

HEALTH CARE AND HUMAN SERVICES POLICY, RESEARCH, AND CONSULTING―WITH REAL-WORLD PERSPECTIVE.

DATE:

March 2016

PREPARED FOR:

The Administration for Community Living 

SUBMITTED BY:

The Lewin Group, Inc.
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Executive Summary

Background

The National Family Caregiver Support Program (NFCSP) represents a significant Federal 

investment in supporting caregivers who provide care and assistance to aging adults and to 

grandparents raising grandchildren. Through this program, the Aging Network helps meet the 

immediate needs of caregivers and care recipients while also being the catalyst for broadening

the long-term care (LTC) service systems at State, Territory, local, and Tribal levels to better 

support families. Its ultimate goal is to support individuals who prefer to age in their own homes 

and communities—as opposed to institutional settings—through lower-cost, nonmedical services 

and supports. The Administration for Community Living (ACL) sought to gauge the impact of 

its investment in the NFCSP by conducting a comprehensive evaluation to improve program 

efficiency, client outcomes, and effective targeting of vulnerable elders and their caregivers. The

evaluation will also provide guidance to ACL as it takes the necessary steps to improve Older 

Americans Act (OAA) programs, ensuring that the vision of consumer choice and direction is 

met.

Established via the reauthorization of the OAA by the 106th Congress in 2000, the Title III-E

NFCSP became the first comprehensive Federal program designed to support the needs of family

caregivers as they lend assistance to their older family members as well as grandparent and older 

relative caregivers with minor children under their care.

NFCSP calls for all states and tribes, working in partnership with Area Agencies on Aging 

(AAAs) and local service providers (LSPs) in the community, to offer five core services for 

family caregivers1including information to caregivers about available services: assistance to 

caregivers in accessing supportive services, individual counseling, support groups and caregiver 

trainings, respite care, and supplemental services. 

ACL included these core services based on research evidence that they would best meet the 

range of caregivers’ needs while affording flexibility through the provision of supplemental 

services.

This evaluation is focused on the NFCSP services provided to:

► Adult family members or other informal caregivers age 18 and older providing care to 

individuals age 60 and older;

► Adult family members or other informal caregivers age 18 and older providing care to 

individuals of any age with Alzheimer’s disease and related disorders.

The current project is the first full-scale evaluation of the NFCSP. ACL recognizes the 

differences in service delivery in different communities. The NFCSP process evaluation allows

for a broader understanding of these differences while also highlighting common practices. 

Evaluation Objectives and Methodology

The overall purpose of this process evaluation is to understand and document the strategies used

to meet NFCSP goals. The methodology aligns with the research questions identified below, 

 

1

http://www.aoa.gov/AOA_programs/OAA/oaa_full.asp#_Toc153957627
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with an emphasis on understanding the program’s contribution to LTC system reform and 

identifying effective program models. The evaluation will promote a better understanding of

program impacts at multiple levels (i.e., on LTC policy and HCBS systems and programs at the

State and local levels). It also identifies opportunities for change.

The process evaluation focuses on two broad research questions:

► How does the program meet its goals? Do caregivers have easy access to a high-quality, 

multifaceted system of support and services that meets caregivers’ diverse and changing 

needs and preferences? What systems must be in place to achieve this access? 

► Has the program contributed to LTC system efficiency? How is the NFCSP integrated 

or coordinated with other LTC programs, and what is the effect? 

The NFCSP process evaluation has three primary objectives: 

1) Provide information to support program planning, including an analysis of program 

operations;

2) Develop information about program efficiency; and,

3) Assess program effectiveness in determining community and client needs, targeting 

and prioritizing, and providing services to family caregivers.

The NFCSP survey results offer meaningful insights into operations that support family 

caregivers daily. The questions focus on how organizations and agencies provide this support, 

what this support consists of, and what systemic challenges face institutions providing support. 

The NFCSP process evaluation has assessed the way SUAs, AAAs, and LSPs planned for and 

operated their programs. The SUA survey was administered to all 54 states and territories that 

operate an NFCSP2. The evaluation team surveyed all 619 AAAs active at the time of the survey. 

In addition, the survey was administered to a sample of LSPs from the responding AAAs. 

Results

The following are a selection of key findings of the NFCSP Process Evaluation.

Organization Background

SUAs, AAAs, and LSPs were asked to provide background on their organizations. 

► SUAs reported on the number of AAAs in their state. The 44 SUAs that were comprised of 

multiple planning and service areas (PSAs) reported a mean of 14.6 AAAs and a range of 3

to 59 AAAs in their states. The other 10 SUAs are single PSA states that operate as AAAs 

themselves. 

► AAAs provided additional background information, including the governance of their 

organizations. The largest share of AAAs reported their governance structure as an 

independent, not-for-profit agency (40.4 percent), with other common responses being a 

division of a city or county government (29.6 percent), and a part of a council of 

governments or regional planning and development agency (24.1 percent).

 

2 The Virgin Islands and Commonwealth of the Northern Mariana Islands, which do not operate an NFCSP
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► The largest share of LSPs reported being a not-for-profit agency (55.0 percent), followed 

by a for-profit agency (23.5 percent). 

History of Caregiver Services Availability

SUAs and AAAs described services available to caregivers before the NFCSP. 

► An analysis of services available to caregivers before and after the NFCSP started, as 

reported by SUAs, found a 247 percent increase in support group services, a 227 percent 

increase in training and education services, a 47 percent increase in information and referral 

(I&R) services, a 563 percent increase in caregiver counseling, and a 93 percent increase in 

respite care services. 

► AAAs were asked if they had established a caregiver program, defined as a set of services 

specifically for caregivers, before the NFCSP started. One hundred twenty-three AAAs 

(27.6 percent) responded that they did operate a caregiver program before 2000, while 231 

AAAs (51.8 percent) reported no prior program.

NFCSP Staffing and Training

The means by which SUAs, AAAs, and LSPs administer their programs were examined by 

asking questions about NFCSP staff, volunteers, and training. 

► Forty SUAs (78.4 percent) responded that they currently employ a caregiver program 

manager or coordinator who plans, develops, administers, implements, or evaluates their

NFCSP or performs any combination of the foregoing tasks. 

► AAAs reported a mean of 2.6 full-time equivalent (FTE) employees at their agency who 

work on the caregiver program in a typical week. When stratified by AAA budget size, 

large AAAs have a mean of 4.3 FTE employees at their agency who work on their 

caregiver programs, with small and medium AAAs averaging slightly fewer than 2.0 FTE

employees. 

► When AAAs were asked about the types of tasks that volunteers perform for their NFCSP, 

the majority (54.6 percent) answered that they employ no volunteers. AAAs who do 

engage volunteers reported that such workers commonly provide administrative program 

support (40.9 percent) and caregiver training and education (40.4 percent). 

► To gauge organization size, LSPs were asked how many FTE employees they had in the 

most recently completed fiscal year. LSPs reported an average of 48.1 FTE employees and 

33.8 part-time employees on staff. An examination of the number of full- and part-time 

LSP employees by categories found that more than 50 percent of LSPs are operating with 

15 or fewer FTE employees, and more than 65 percent have 15 or fewer part-time 

employees.

Targeting Caregiver Populations 

To elicit more information about individuals whom the Aging Network makes a specific effort to 

serve, AAAs and SUAs were asked about their targeted outreach to caregiver populations. 

► More than 80 percent of SUAs that reported targeting have made a specific effort to serve 

caregivers of persons with Alzheimer’s disease or a related disorder with neurological and 

organic brain dysfunction. A similar percentage of SUAs (81.6 percent) target grandparents 

raising grandchildren and other relative caregivers for the NFCSP. 
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► When asked about activities they undertake to address the needs of special populations of 

caregivers, nearly 70 percent (69.6 percent) of SUAs reported using targeted marketing and 

outreach campaigns to establish contact with such populations. 

► AAAs also reported on targeting. One in five AAAs (17.8 percent) makes no specific effort

to address special populations. Among AAAs that do make a concerted effort, populations 

most commonly targeted are caregivers of persons with Alzheimer’s disease or a related 

disorder, grandparents raising grandchildren and other relative caregivers, and rural 

caregivers.

► When asked about activities undertaken to address the needs of special populations of 

caregivers, AAAs that do respond to such needs mentioned conducting targeted marketing

and outreach campaigns (69.8 percent) and providing materials in languages other than 

English (36.4 percent).

Partnerships

To gauge the types of partnerships the respondents cultivate to improve service offerings, SUAs, 

AAAs, and LSPs were asked about current working relationships they have formed.

► Nine SUAs reported working with other State agencies to implement the NFCSP. 

► AAAs named as many as three of their most important partners for administering their

NFCSP. Nearly two-thirds (61.1 percent) of AAAs identified the state and local chapters of 

the Alzheimer’s Association and other such organizations. Approximately one-half (51.8 

percent) indicated that Aging and Disability Resource Centers or Aging Resource Centers 

are a key partner, as well. More than 40 percent of AAAs (41.6 percent) also responded 

that health care providers—including community health centers, hospitals, and physicians’ 

offices—are among the three most important partners for administering their program.

NFCSP Intake and Screening 

Intake and screening techniques differ within and between AAAs and SUAs. 

► Nearly one-half (48.8 percent) of responding SUAs indicated that their state requires the 

completion of a standardized set of questions, but the AAA or individual providers may

develop their own intake process. More than 40 percent (44.2 percent) of SUA caregiver 

support programs share relevant caregiver intake data with other programs in which the 

caregiver might be eligible for support (either verbally or electronically), although 34.9 

percent reported that they receive this information from other programs. 

► SUAs were asked about State policies around screening activities for caregiver support 

services. Many SUAs (41.9 percent) responded that their NFCSP shares relevant screening 

data with other programs for which the caregiver might qualify. The same percentage of 

SUAs reported that they require a standardized data set, but the AAA or the individual 

providers develop their own screening processes.

► AAAs were asked about their intake and screening processes, including whether they have 

a standard set of questions or steps to determine whether a caregiver is present when a 

consumer calls. Among the more than two-thirds (68.3 percent) of AAAs that have these 

tools, almost all (90.2 percent) have a standard process for following up with the caregiver. 
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► When AAAs were asked whether intake and screening are separate activities for caregiver 

support services, fewer than one-half (42.4 percent) responded affirmatively; 54.8 percent 

noted that intake and screening are not separate activities for caregiver support. 

Assessment and Reassessment

Assessment and reassessment activities in which SUAs, AAAs, and LSPs engage are critical for 

determining how clients receive services. To further understand these strategies, agencies and 

other organizations were asked for information about the policies guiding these processes.

► SUAs reported that the states have policies, regulations, or guidance on individual-level 

caregiver assessments for the NFCSP as it relates to who is to be assessed (82.0 percent), 

the content of the assessments (66.0 percent), how often the assessments are conducted 

(58.0 percent), and who can perform assessments (52.0 percent).

► Most SUAs (58.8 percent) reported having a standardized process for assessing caregiver 

needs. Twenty-one of the 30 respondents (70.0 percent) use this process for all informal

caregiver program clients, and the remaining 9 (30.0 percent) reported using the process for

only specific services. 

► SUAs also responded to questions about the individual being assessed. A majority of them 

(81.1 percent) reported assessing both the caregiver and the care recipient for their 

caregiver support program. A small proportion assess either only the caregiver (7.6 percent) 

or the care recipient (7.6 percent), while 3.8 percent conduct no assessment.

► AAAs reported on assessment recipients in their caregiver support program. A majority of 

AAAs (69.7 percent) assess both care recipients and caregivers in their caregiver support 

programs. A smaller proportion reported that they assess only caregivers (11.7 percent) or 

care recipients (15.4 percent). Few AAAs (3.2 percent) conduct no assessment.

► AAAs were also asked whether they use a standardized assessment tool. Most AAAs 

(71.2 percent) use a standardized assessment tool, 21.4 percent use no standardized 

assessment tool, and 7.4 percent do not know whether they use such a tool.

► A similar set of questions was posed to LSPs about caregiver assessments, including 

whether they conduct an initial comprehensive needs assessment for their NFCSP caregiver 

clients. Approximately one-half (52.2 percent) of LSPs do so, while the remainder do not.

► Reporting on the frequency of sharing assessment findings with AAAs, the majority 

(61.8 percent) of LSPs indicated that they share this information all or most of the time,

while 23.1 percent share these findings only some of the time. Fifteen percent of LSPs 

hardly ever or never share caregiver assessment findings with their AAA.

Wait Lists and Service Caps

SUAs, AAAs, and LSPs were asked for background information on their wait lists and service 

caps as well as for information about policies surrounding their usage.

► SUAs reported on whether they currently have policies, guidance, or regulations for 

creating and managing wait lists for NFCSP services. More than one-half (58.8 percent) of 

SUAs responded that they currently have no such policies, guidance, or regulations.
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► Slightly more than one-half of SUAs (53.7 percent) have no wait list for any NFCSP 

services, while 38.9 percent do have a wait list, and 7.4 percent do not know whether they 

have such a list.

► When asked whether a wait list exists for NFCSP services, more than one-half (55.3 

percent) of AAAs reported that they have no wait list for such services. A wait list does 

exist, however, in 40.3 percent of AAAs, and 4.4 percent of AAAs do not know whether

there is a wait list.

► AAAs reported on the organization of their wait lists. The majority of AAAs (56.4 percent) 

have a single wait list maintained for the NFCSP overall, while 27.5 percent maintain 

multiple wait lists by NFCSP specific caregiver support services.

► More than 7 in 10 AAAs (74.4 percent) have a policy that limits or caps the amount or cost 

of service a caregiver may receive. The majority (60.8 percent) of AAAs set their own 

policies regarding service caps.

NFCSP Services

To share more about the range of services offered through their NFCSP, AAAs, SUAs, and LSPs 

were asked to respond to questions about them. 

► All SUAs (n=53) reporting on the services they deliver through their NFCSP indicated that 

they offer I&R, and 94.3 percent offer outreach presentations. When asked about assistance 

services, SUAs (n=54) highlighted their work with caregivers in care and case management 

(79.6 percent) and options counseling (72.2 percent). All except one SUA (52 of 53) 

reported that they facilitate caregiver support groups, and 45 SUAs (84.9 percent) make 

individual counseling available. Forty-nine (92.5 percent) offer training on various aspects 

of caregiving. 

► SUAs also reported on the types of respite made available through their NFCSP. All SUAs 

provide some form of respite, with the majority (98.2 percent) delivering in-home respite 

during normal business hours. Of note is the fact that 68.5 percent of SUAs offer 

emergency respite services. 

► According to nearly three-quarters (74.7 percent) of AAAs, caregivers apply for respite 

care services—including services provided in institutional settings, in the home, and 

through day services—far more often than for any other service. Additionally, 

approximately one-quarter of AAAs responded that information on Federal and State 

financial assistance programs (26.5 percent) and general information about caregiving 

(25.6 percent) and home health care (25.6 percent) are commonly requested.

► Additional details were provided on caregiver training and education. When asked about 

their policy on frequency of caregiver training and education offerings, AAAs answered 

with a similar distribution across the response options: frequency determined by local 

service provider (31.4 percent), regularly scheduled (30.7 percent), and programming 

provided on an as-needed basis (30.3 percent). Only 4.7 percent of AAAs reported that 

education benefits are unavailable to caregivers in their NFCSP..

► AAAs reported, as well, on the types of caregiver respite services they deliver, either 

directly by their agency or via a contracted provider. The vast majority of responding 

AAAs deliver in-home respite during normal business hours (95.2 percent). As well as day 
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program respite (67.6 percent), many responding AAAs provide in-home respite during 

evenings (71.2 percent).

► When asked to estimate how often caregivers’ minimum respite needs are met, about onehalf (52.4 percent) of AAAs reported “some of the time,” with another 41.3 percent 

reporting “all or most of the time.” A small number (6.1 percent) of AAAs responded 

“hardly ever.”

► The majority of LSPs provide caregiver respite services (79.1 percent), I&R (68.7 percent), 

and training and education (51.4 percent).

► Among LSPs delivering caregiver respite services, 80.4 percent offer in-home respite care 

during normal business hours, and 55.6 percent offer in-home respite care during evenings. 

Fewer than one-half (44.1 percent) provide adult day program respite services.

► LSPs were asked how often they can meet the elements of their service plans. Nearly threequarters (71.3 percent) of LSPs answered that all or most of the time they can meet all the 

service plan elements (e.g., frequency of visits, days requested) for NFCSP caregiver 

clients. Slightly more than one-fifth (21.4 percent), however, can do so only some of the 

time, while 7.2 percent can hardly ever or never do so.

NFCSP Performance Monitoring

To evaluate the role performance monitoring plays in NFCSP administration and the potential 

insights it yields, SUAs, AAAs, and LSPs were questioned about levels of program monitoring, 

types of data collected, use and sharing of monitoring results, performance reviews, use of 

caregiver client satisfaction surveys, and other relevant issues. 

► SUAs reported on how they monitor NFCSP performance. Two-thirds (66.7 percent) of 

SUAs conduct routine program monitoring at the AAA level. Nearly one-quarter conduct

routine program monitoring at either the LSP level (17.7 percent) or both the LSP level and 

the AAA level (5.9 percent). The remainder (9.8 percent) reported no routine program 

monitoring. 

► Reporting on satisfaction assessments for NFCSP caregiver clients, the majority (59.1 

percent) of SUAs indicated that the AAAs assume this responsibility. More than onequarter of SUAs reported that their organization assesses client satisfaction (27.3 percent), 

while the remainder (13.6 percent) reported that client satisfaction is not assessed. 

► When questioned about the frequency of SUA performance reviews for their NFCSP, 

roughly one-half (52.2 percent) of AAAs reported undergoing a formal, SUA-administered 

onsite or desk program review once a year. More than one-third of AAAs responded that 

they receive a program review less often than once a year (34.2 percent), and 6.3 percent 

reported receiving a review more frequently. 

► When asked about the frequency of formal, onsite, or desk program reviews at the provider 

level, nearly two-thirds (63.4 percent) of AAAs answered that such reviews take place 

annually. Fourteen percent of AAAs reported LSP reviews occurring more frequently than 

once a year, while about 15 percent reported LSP reviews occurring every 2 or 3 years

(15.7 percent). 
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► Reporting on the frequency with which they assess NFCSP caregiver client satisfaction, 

more than one-half (56.0 percent) of the AAAs that assess program satisfaction survey 

participants annually. 

► LSPs reported on how often they conduct NFCSP caregiver client satisfaction surveys to 

assess service quality. At the LSP level, a wide range of timeframes for conducting these 

surveys exists. Although almost one-half reported annual surveys (45.6 percent), more than 

one-tenth (12.6 percent) reported never conducting these surveys. 

Other Caregiver Programs and HCBS Integration

Aging Network participants offered feedback on other caregiver programs and integration of the 

caregiver support program with other HCBS programs. 

► More than two-thirds (68.6 percent) of SUAs indicated that no effort has been made at the 

State level to use the same caregiver and care recipient assessment tools across all HCBS 

programs. Among the 31.4 percent (n=16) of SUAs reporting that such an effort has been 

made, three-quarters indicated that those programs involved are Medicaid HCBS for the 

elderly and Medicaid HCBS for adults with disabilities. More than two-thirds (68.8 

percent) include State-funded caregiver programs or services, and one-quarter include 

kinship care programs.

► More than one-half (54.7 percent) of SUAs reported that their state administers a separate 

caregiver program funded outside the NFCSP. The majority of SUAs with a non-OAA 

program reported that their state’s non-OAA caregiver program began before the NFCSP 

(53.6 percent). More than one-third (35.7 percent) of SUAs reported that their non-OAA 

program began after the NFCSP, and only one SUA (3.6 percent) reported that the nonOAA program began at the same time as the NFCSP. 

► About one-quarter of AAAs reported that they administer a separate caregiver program

funded outside the OAA NFCSP. Of those 24.1 percent (n=105), almost one-half (47.6 

percent) reported that their separate caregiver program has an income or asset eligibility 

requirement—either on the part of the caregiver or the care recipient. Similarly,

approximately one-half (47.1 percent) of AAAs administering a separate non-NFCSPfunded caregiver program reported that caregivers or care recipients who meet certain 

criteria receive priority for services in the separate program. 

Future of the National Family Caregiver Support Program

SUAs, AAA, and LSPs expanded on significant issues they anticipate facing and suggestions for 

improvement to the NFCSP. 

► SUAs were asked to describe the most significant issues their informal caregiver program 

will face over the next year, to which an array of answers emerged, including obstacles and 

planned improvements, increasing demand from a growing population (n=10), limited or 

decreasing funding (n=19), and limited provider availability (n=3). 

► One hundred nine AAAs responded to a request for suggestions to improve the way the 

NFCSP program works. Their comments cover a range of areas and perspectives.

Respondents would like more guidance in some areas, including increased direction on and 

standardization in, program implementation forms and use of funds, and caregiver 

assessments.
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► Asked specifically about providing caregiver services one year from now, an 

overwhelming majority of LSPs responded that they “very likely” will continue. Expanding

on what could impact their likelihood of providing caregiver services one year from now, 

the majority of LSPs noted that funding availability is a factor (n=30). Related to funding, 

they also noted that their continued provision of services depends on whether they are 

contracted to do so (n=27). Many LSPs added that they are committed to providing 

services, and that this service provision is part of their organization’s mission (n=33). 

► LSPs responded with suggestions for improvements to the NFCSP program, with the 

exception of additional funding. Many LSPs noted that they have no suggestions and that 

they feel the program is working well (n=38). Some did suggest types of caregiver services 

that could be added (n=26), however, including broadening the provision of culturallybased caregiver services and increasing flexibility in caregiver service plans to adjust to 

their changing needs. 

Discussion and Conclusion

Examining the history of caregiver services available before and after the NFCSP’s enactment in 

2000, we clearly recognize that this effort has proven to be a catalyst for supports and services 

designed specifically for caregivers. A review of the types of caregiver services available before 

and after 2000 confirms the substantial increase that has occurred. These achievements speak for 

themselves and for the success of the NFCSP over the past decade and a half. Nevertheless, work 

remains to be done and improvements can be made. Some key findings from this study include:

► Dedicated staff demonstrate a commitment to caregivers and, by extension, to care 

recipients. Almost 80 percent of SUAs reported currently employing a caregiver program 

manager or coordinator who plans, develops, administers, implements, or evaluates the 

NFCSP or performs any combination of the foregoing tasks. At the AAA level, NFCSP 

staff are integrated into other programs and projects, as well, outside the NFCSP. More 

than half of LSPs are relatively small, employing fewer than 15 FTE staff. LSPs noted a 

variety of tasks completed by volunteers, suggesting that smaller organizations might be 

better able to complete the range of activities by routinely using volunteer assistance.

► In line with OAA guidance, the majority of SUAs and AAAs are making an effort at 

outreach to special caregiver populations—primarily caregivers of people with Alzheimer’s 

disease, grandparents raising grandchildren and other relative caregivers, and rural 

caregivers. To address the specific needs of these populations, both SUAs and AAAs 

employ targeted marketing and outreach campaigns, informed by caregiver and care 

recipient criteria such as socioeconomic status and geographic location. 

► Partnerships constitute an important part of local implementation of the NFCSP. At the 

AAA level, partnerships are a critical component of operating NFCSP services. AAAs 

reported involvement in partnerships for planning and developing programs, conducting 

program outreach, contacting hard-to-reach caregivers, developing a community needs 

assessment, and other such activities. 

► Caregiver assessments have become an area of increasing focus in the Aging Network 

community. The majority of SUAs and AAAs reported assessing both the caregiver and the 

care recipient, with a little more than half of SUAs reporting that they use a standardized 

caregiver assessment. Notably, although 81.1 percent of SUAs assess both caregiver and 
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care recipient, 69.7 percent of AAAs do so. A smaller proportion of AAAs assess only the 

care recipient (15.4 percent). Despite the large proportion of SUAs reporting that they 

assess at the caregiver level, almost half (41.2 percent) of responding SUAs answered that 

they have no standardized process for assessing caregivers. Room for growth in 

standardization exists at the State and local levels, for both their processes and their 

assessment instruments.

► At the State level, information on wait lists and service caps was minimal. More than one 

half of SUAs (58.8 percent) reported that they currently have no policies, guidelines, or 

regulations for creating and managing wait lists for NFCSP services. Similar to the SUA 

response, more than half of AAAs indicated that they have no wait list for NFCSP services. 

For AAAs that do keep a wait list, a single list for all services (not a specific service) is 

most commonly maintained. Although AAAs reported that wait lists exist, only a small 

percentage reported information about the number of individuals on their wait list. When

wait lists exist for specific NFCSP services, AAAs most likely reported a list for respite

care, suggesting the demand for, and importance of, this service. 

► At the local level, rates for inability to accept NFCSP clients are low. When LSPs note that 

they are unable to accept a client, usually the potential client has more needs than can be 

met. This circumstance might suggest that the program is failing to reach caregivers with 

the highest needs, that AAAs must identify multiple provider organizations to meet a 

caregiver’s complex needs, or both.

► Among NFCSP services, respite care continues to be one of the most in demand service. 

AAAs reported that the type of information caregivers request most often concerns respite 

care (74.7 percent). 

► The majority of SUAs and AAAs reported regular program monitoring. Few SUAs noted 

that they conduct no program monitoring (9.8 percent), with the remaining conducting their 

monitoring primarily at the AAA level (66.7 percent). Few SUAs conduct caregiver client 

satisfaction surveys; however, more than half reported that the AAA conducts this 

assessment (59.1 percent). This finding is consistent with more than three-quarters of 

AAAs reporting that they use a satisfaction survey of program participants to assess 

outcomes related to NFCSP services. LSPs also conduct caregiver client satisfaction 

surveys, with only 12.6 percent noting that they never conduct a caregiver satisfaction 

survey. These organizations most frequently reported using the results for managing 

caregiver services and for program planning. 

► The NFCSP process evaluation results indicate an opportunity for the NFCSP to become 

better integrated with other HCBS programs. More than two-thirds of SUAs reported that 

no effort has been made to integrate the programs at the State level. Where progress has 

been made, SUAs reported integration of the NFCSP with Medicaid HCBS programs. 

Barriers to HCBS integration include more frequently reported issues with different 

eligibility requirements, different client populations, and different reporting requirements 

as well as organizational, cultural, and administrative differences.

► At both the SUA and AAA levels, a commonly stated concern for NFCSP challenges is 

limited or decreased funding. This concern corresponds directly to a concern over 

increasing demand from a growing population. Some SUAs specifically highlighted 

concerns over provider availability in rural areas. At the local level, 93 percent of LSPs 
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believe they will still be providing services 1 year from now. However, their major concern 

for ceasing service provision is the same concern of SUAs and AAAs—that funding will be 

decreased, limited, or eliminated. 

A key finding from the NFCSP process evaluation is that this program, enacted in 2000, proved 

to be a catalyst for either providing or formalizing caregiver support services. For some states, 

the NFCSP might be the only means through which caregivers can receive much needed 

services. This process evaluation has examined the policies and procedures through which SUAs, 

AAAs, and LSPs meet NFCSP goals. Given the breadth of services that programs reported

offering, the Aging Network has succeeded in developing a system through which caregivers can 

access supports.

Multiple recommendations arise from reviewing the NFCSP process evaluation data and from 

lessons learned in fielding the surveys to SUAs, AAAs, and LSPs. These recommendations 

include ongoing NFCSP communications across the Aging Network, additional research 

recommendations (e.g., research on wait list policies), further standardization of caregiver 

assessment tools and processes, and providing additional funding for this important caregiver 

service.