U.S. Department of Health and Human Services
Channeling Effects on Informal Care
Jon B. Christianson
Mathematica Policy Research, Inc.
This report was prepared under contract #HHS-100-80-0157 between the U.S. Department of Health and Human Services (HHS), Office of Social Services Policy (now the Office of Disability, Aging and Long-Term Care Policy) and Mathematica Policy Research, Inc. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The DALTCP Project Officer was Robert Clark.
In September 1980 the National Long Term Care Demonstration--known as channeling--was initiated by three units of the U.S. Department of Health and Human Services. It was to be a rigorous test of comprehensive case management of community care as a way to contain the rapidly increasing costs of long term care for the elderly while providing adequate care to those in need.
A. THE INTERVENTION
Channeling was designed to use comprehensive case management to allocate community services appropriately to the frail elderly in need of long term care. The specific goal was to enable elderly persons, whenever appropriate, to stay in their own homes rather than entering nursing homes. It had no direct control over medical or nursing home care expenditures. It financed direct community services, to a lesser or greater degree according to the channeling model, but always as part of a comprehensive plan for care in the community.
Channeling was implemented to work through local channeling projects. The core of the intervention consisted of seven features:
Outreach to identify and attract potential clients who were at high risk of entering a long term care institution
Standardized eligibility screening to determine whether an applicant met the following pre-established criteria: (a) Age: must be 65 years or older. (b) Functional disability: must have two moderate disabilities in performing activities of daily living (ADL), or three severe impairments in ability to perform instrumental activities of daily living (IADL), or two severe IADL impairments and one severe ADL disability. Cognitive or behavioral difficulties affecting ability to perform ADL can count as one of the severe IADL impairments. (c) Unmet needs: must have an unmet need (expected to last for at least six months) for two or more services or an informal support system in danger of collapse. (d) Residence: must be living in the community or (if institutionalized) certified as likely to be discharged within three months.
Comprehensive in-person assessment to identify individual client problems, resources, and service needs in preparation for developing a care plan
Initial care planning to specify the types and amounts of care required to meet the identified needs of clients
Service arrangement to implement the care plan through the provision of both formal and informal in-home and community services
Ongoing monitoring to ensure that services are appropriately delivered and continue to meet client needs
Periodic reassessment to adjust care plans to the changing needs.
Two models of channeling were tested. The basic case management model relied primarily on the core features. The channeling project assumed responsibility for helping clients gain access to needed services and for coordinating the services of multiple providers. This model provided a small amount of additional funding to fill in gaps in existing programs. But it generally utilized resources already available in each community, thus testing the premise that the major difficulties in the current system were problems of information and coordination which could be largely solved by client-centered case management.
The financial control model differed from the basic model in several ways:
It expanded service coverage to include a broad range of community services.
It established a funds pool to ensure that services could be allocated on the basis of need and appropriateness rather than on the eligibility requirements of specific categorical programs.
It empowered case managers to authorize the amount, duration, and scope of services paid out of the funds pool, making them accountable for the full package of community services.
It imposed two limits on expenditures from the funds pool. First, average client expenditure could not exceed 60 percent of the average nursing home rate in the area. Second, expenditures for an individual client could not exceed 85 percent of that rate without special approval.
It required clients to share in the cost of services if their income exceeded 200 percent of the state's Supplemental Security Income (SSI) eligibility level plus the food stamp bonus amount.
B. THE DEMONSTRATION AND EVALUATION
Ten sites across the country participated in the demonstration:
|Basic Case Management Model
|Financial Control Model
|Greater Lynn, Massachusetts
|Middlesex County, New Jersey
|Rensselaer County, New York
In September of 1980, the ten participating states, a technical assistance contractor, and a national evaluation contractor were awarded contracts and began planning. A local project in each state was then selected. These were already well established departments within existing human service organizations (typically area agencies on aging or private nonprofit service providers). The ten local projects opened their doors to clients between February and June of 1982, and were fully operational through June of 1984. The local projects were phased out of the federal program in March of 1985, although most continue to operate under state or other auspices.
The goal of the evaluation, in addition of documenting the implementation of channeling, was to identify its impact on:
Use of formal health and long term care services, particularly hospital and nursing home care and community services
Public and private expenditures for health services and long term care
Individual outcomes including mortality, physical functioning, unmet service need, and social/psychological well-being
Caregiving by family and friends, including the amount of care provided, the amount of financial support provided, and caregiver stress, satisfaction, and well-being.
To compare channeling's outcomes with what would have happened in the absence of channeling, the evaluation relied on an experimental design. Elderly persons referred to each channeling project were interviewed to determine their eligibility for channeling. If found eligible, they were randomly assigned either to a treatment group whose members had the opportunity to participate in channeling or to a control group whose members continued to rely on whatever services were otherwise available in their community. In all, 6,340 persons were randomly assigned. Given the substantial death rate among this population as well as interview noncompletion, this yielded research samples of 3,372 to 6,326 elderly persons, depending on the analysis.
C. RESULTS ON INFORMAL CAREGIVING IN THE CHANNELING DEMONSTRATION
Two sources of data underlie the informal caregiver analysis. The first consists of responses of elderly sample members to questions about their receipt of care and financial assistance from all informal caregivers. The second consists of responses to a more detailed set of questions asked of the person designated by the sample member as their primary informal caregiver. These address the caregiving activities and financial assistance by the primary caregivers and also their well-being. Due to the timing of the decision to conduct the caregiver survey, the caregiver sample is smaller than the elderly sample.
1. Caregiving Patterns at Start of the Demonstration
The patterns of informal care and characteristics of the caregivers of the channeling population matched those that were to be expected from the literature. Most of the elderly sample (83 to 78 percent for the basic case management and financial control models, respectively) reported having some informal caregiver, with the average caregiving network having slightly less than two members. Help with housework, laundry, or shopping (79.0 and 74.0 percent) and meal preparation (69.7 and 64.4 percent) were the most common types of informal assistance received by sample members in their homes; help with medical treatments was the least common (14.4 and 12.6 percent). Sample members received about four visits a week from visiting informal caregivers. These totaled 10-11 hours a week, more than half of which were devoted to providing a combination of personal and housekeeping care.
Three-quarters of the primary caregivers were female, most of them daughters or spouses. They tended to be themselves elderly (averaging 58-60 years old) and in good health. Although more than half had not been employed in the previous year, very few reported that caregiving restricted their employment opportunities. On days when they helped, primary caregivers devoted 4 to 5 hours a day to caregiving activities, and an additional 2 hours to socializing with the sample member. Personal care was the most frequently provided care. About 45 percent also provided some financial assistance to sample members, averaging $80-$85 a month (about twice that if only those caregivers providing assistance are included).
About two-thirds of the caregivers reported limitations on their social lives due to caregiving, and half reported that sample members sometimes became upset, yelled at them, or refused to cooperate, and that this was a significant behavior problem. Nevertheless, about three-quarters reported that they got along quite well with the sample members they cared for, although about half worried quite a lot about obtaining sufficient help for them. The stress experienced by primary informal caregivers appeared to be substantial, with more than one-third reporting that they experienced severe emotional stress, and about the same proportion expressing dissatisfaction with their lives.
2. Effects on Informal Caregiving
The channeling demonstration was intended to increase the use of formal, community-based long term care by the frail elderly. Clearly this could result in substitution of formal services for care provided informally by family and friends. Such substitution, if it occurred, could imply that the public sector was paying for services that otherwise would be provided by family and friends.
There was no evidence that channeling under the basic case management model led to substitution of formal for informal care.
Channeling under the financial control model did lead to modest substitution of certain services, but there is no evidence of overall substitution on a wide scale. Nor is there evidence of reductions in informal care provided by primary caregivers. The effect appears to be due primarily to withdrawal of some friends and neighbors.
The services for which there was evidence of some substitution under the financial control model included: meal preparation; housework, laundry, or shopping; general supervision; delivery of prepared meals; and help with transportation. In all cases, the rates of substitution were modest. For meal preparation and housework, laundry, and shopping, for example, significant increases in the percent of treatment group members receiving formal services in the neighborhood of 20-25 percentage points were paired with significant decreases in the percent receiving informal services of 3-6 percentage points. These estimates indicate that an approximate 4-5 percentage point increase in the percent of sample members receiving the formal services identified above was associated with a 1 percentage point decrease in the percent of sample members receiving the same services informally.
Evidence of substitution was also found under the financial control model for three broader measures of informal caregiving: number of different services provided, percent of sample members with a caregiver, and number of visiting caregivers. For these measures, reductions in informal care were again small and associated with much larger increases in formal care. Furthermore, no substitution effects were detected for the number of visits and hours of care received, both presumably more comprehensive measures of overall caregiving effort.
The possibility that shorter-term reductions in informal care might be outweighed by delayed institutionalization of sample members, which would permit informal care to be delivered over a longer time period, was also explored. Channeling was found to have no impact on the percent of sample members residing in the community at 6, 12, and 18 months. Therefore, the substitution observed in the short run represented a reduction that is not likely to be negated in the longer term.
The reductions in informal care that did occur under the financial control model were not due to decreased efforts on the part of the primary caregivers. Rather, the effects appeared in measures reflecting the informal care received from all caregivers. For caregivers living in the community, for example, at six months treatment group members averaged 1.6 caregivers versus 1.7 for control group members and, at 12 months, treatment group members averaged 1.4 versus 1.6 for control group members. These reductions apparently occurred primarily through withdrawal of some friends and neighbors from caregiving. For caregivers living in the community, for example, at six months 19.4 percent of the treatment group had a friend or neighbor in their caregiving network versus 24.3 percent of the control, a 4.9 percentage point reduction. At 12 months the reduction had increased to 5.1 percentage points (16.3 versus 21.4 percent). With respect to type of care, the reductions noted above were concentrated--as might be expected--in the areas were some substitution was found. For meal preparation, for example, at six months 64.5 percent of the treatment group living in the community was receiving help versus 69.7 percent of the control group, a 5.3 percentage point reduction. For housekeeping, laundry, or shopping, at six months 74.6 percent of the treatment group living in the community was receiving help versus 80.8 percent of the treatment group, a reduction of 6.2 percentage points. For delivery of prepared meals, receipt of transportation, or day care services, at six months 27.8 percent of the treatment group was receiving help versus 34.5 percent of the control group, a 6.7 percentage point reduction.
There was no overall effect on informally provided financial assistance by all caregivers or by primary informal caregivers. Nor was there any evidence of channeling effects which varied with sample member characteristics or sites.
With respect to primary caregivers, there is no evidence that channeling had any effect on their overall provision of informal care. This result does not conflict with the modest reductions in care received from all informal caregivers. Those reductions were associated with visiting caregivers and friends or neighbors--who were seldom designated as primary caregivers.
There is some suggestion that channeling led primary caregivers to concentrate their efforts in certain areas. First, for elderly sample members living in the community, channeling under the basic case management model increased caregiver involvement in arranging services or benefits. At six months, for example, 56.0 percent of the treatment group primary caregivers engaged in this activity versus 45.9 percent of the control group primary caregivers. Second, channeling under the financial control model increased the frequency with which primary caregivers reported providing help with eating and cleaning up after bowel and bladder accidents and with arranging services and benefits. For example, for all caregivers at 12 months, the daily frequency of helping with eating for the treatment group was 0.38 versus 0.21 for the control group. A possible explanation for this is that the increased provision of formal services under the financial control model allowed primary caregivers more time for tasks not readily performed by formal providers.
3. Effects on the Well-Being of Primary Informal Caregivers
Channeling improved the well-being of primary caregivers by some measures. Channeling under the basic case management model reduced the percent of caregivers who perceived limitations on their privacy and social life. At six months, for example, for the sample living in the community under the basic case management model 8.8 percent of the treatment group caregivers perceived restricted privacy as a serious problem versus 15.9 percent of the control group caregivers. The treatment/control difference was in the same direction but no longer significant at 12 months, possibly indicating that channeling had a strong early effect on caregiver perceptions which diminished over time.
Channeling seems to have reduced somewhat caregiver worry about obtaining sufficient help under both models. At six months under the financial control model, for sample members in the community, 29.2 percent of caregivers to treatment group members worried quite a lot about this versus 40.8 percent for the control group. The treatment/control difference was again in the same direction, but no longer significant at 12 months. Smaller differences in the same direction but not statistically significant were observed for the basic model.
Finally, channeling under both models increased the overall life satisfaction expressed by primary caregivers. At six months, for example, for the sample in the community under the basic case management model, 20.9 percent of treatment group caregivers found life not very satisfying versus 29.9 percent of the primary caregivers in the control group. The comparable estimates under the financial control model were 27.6 versus 35.6 percent.
There is little evidence that channeling reduced caregiver perceptions of the degree of emotional, physical, or financial strain they experienced due to caregiving. Also, channeling had no effect on caregiver perceptions of their employment limitations or on their earnings and family incomes. Nor did it affect their perceptions of the prevalence of serious objectional behavior on the part of sample members, or the quality of their relationship with the person they cared for.