Simulating the impact of long-term care policy on family eldercare hours.

OBJECTIVE: To understand the effect of current and future long-term care (LTC) policies on family eldercare hours for older adults (60 years of age and older) in Singapore. DATA SOURCES: The Social Isolation Health and Lifestyles Survey, the Survey on Informal Caregiving, and the Singapore Government's Ministry of Health and Department of Statistics. STUDY DESIGN: An LTC Model was created using system dynamics methodology and parameterized using available reports and data as well as informal consultation with LTC experts. PRINCIPAL FINDINGS: In the absence of policy change, among the elderly living at home with limitations in their activities of daily living (ADLs), the proportion of those with greater ADL limitations will increase. In addition, by 2030, average family eldercare hours per week are projected to increase by 41 percent from 29 to 41 hours. All policy levers considered would moderate or significantly reduce family eldercare hours. CONCLUSION: System dynamics modeling was useful in providing policy makers with an overview of the levers available to them and in demonstrating the interdependence of policies and system components.

Caregiver characteristics and economic cost of home-based care: a case study of Maun and Gumare villages in North West District, Botswana.

The home-based care programme in Botswana was initiated partly to augment hospital or clinical care by reducing the healthcare costs associated with chronic illnesses such as HIV/AIDS. A number of studies have pointed to the psyco-social impacts of home based care, however there has been few attempts to quantify the direct and indirect costs associated with home based care. This study was carried out in the North West District of Botswana, which is noted for a relatively larger proportion of households with critically ill persons. The objectives of the study were to identify the characteristics of the caregivers and their patients; to estimate the direct and indirect costs of home-based care; and to estimate caregivers' willingness to pay for care services. Data was collected using a structured questionnaire addressed to 120 primary caregivers and analyzed using SPSS. The economic cost of caregiving was estimated using the replacement cost method. The annual value per caregiver was estimated at P31 320 (US$4818.46). The study also revealed that more often than not, women are involved in caregiving activities.

Medicaid State Plan personal care services: trends in programs and policies.

Policymakers face mounting pressures from consumer demand and the 1999 Olmstead Supreme Court decision to extend formal (paid) programs that deliver personal care to the elderly, chronically ill, and disabled. Despite this, very little is known about the largest program that delivers personal care: the Medicaid State Plan personal care services (PCS) optional benefit. This paper presents the latest available national program (participant and expenditure) trend data (1999-2002) on the Medicaid PCS benefit and findings from a national survey of eligibility and cost control policies in use on the program. The program trends show that, over the study period, the number of states providing the Medicaid PCS benefit grew by four (from 26 to 30), and national program participation, adjusted for population growth, increased by 27%. However, inflation-adjusted program expenditures per participant declined by 3% between 1999 and 2002. Findings from the policy survey reveal that between 1999 and 2002 there was a marked decline in the range of services provided, and by 2004, almost half the programs operated a cap on the hours of services provided.

Paid personal assistance services:an exploratory study of working-age consumers' perspectives.

This study examined the experiences of individuals who use paid personal assistance services (PAS). Structured interview data were collected from a convenience sample of 24 working-age individuals from diverse backgrounds recruited from Centers for Independent Living in nine states. Respondents described their general satisfaction with current paid PAS, but many reported previous experiences with poor care related to the low wages, lack of training of PAS providers, and an inadequate supply of providers. Respondents reported many unmet needs because of a shortage of hours provided by state programs and the lack of help with daily living activities, transportation, childcare, and social activities. The respondents strongly preferred consumer-directed care.

Estimating the expense of a mandatory home-and community-based personal assistance services benefit under Medicaid.

UNLABELLED: Personal assistance services (PAS) are essential for many people of all ages with significant disabilities, but these services are not always available to individuals at home or in the community, in large part due to a significant bias toward institutions in the Medicaid program. This study aims to provide an estimate of the expense of a mandatory personal assistance services (PAS) benefit under Medicaid for persons with low incomes, low assets, and significant disability. DESIGN AND METHODS: We use year 2003 data from the Survey of Income and Program Participation to estimate the number of people living in households who would be eligible, based on having an institutional level of need and meeting financial criteria for low income and low assets, combined with additional survey data on annual expenditures under Medicaid programs providing PAS. RESULTS: New expenditures for PAS are estimated to be $1.4-$3.7 billion per year (in 2006 dollars), depending on the rate of participation, for up to half a million new recipients, more than a third of whom would be ages 65 and older. These estimated expenditures are a tenth of those estimated by the Congressional Budget Office for implementing the Medicaid Community-Based Attendant Services and Supports Act (MiCASSA). IMPLICATIONS: Creating a mandatory PAS benefit for those with an institutional level of need is a fiscally achievable policy strategy to redress the imbalance between institutional and community-based services under Medicaid.

[The effects of need and chances for care time spent in home care arrangements]. / Der Einfluss von Bedarf und Chancen auf Pflegezeiten in häuslichen Pflegearrangements.

Within the concomitant research on the implementation of individual care budgets in Germany, the results of verbal interviews involving 329 persons in need of care were analysed with respect to the relation between the actual time expenditure for care measures and its dependency on the level of care required (according to the statutorily regulated levels of long-term care in Germany) on the one hand as well as determining factors of the environment (social networks, milieus) on the other hand. The results of the survey showed that with a high level of care required, the social environment as a chance factor becomes particularly influential. Under disadvantageous environmental circumstances, the difference in time spent on care measures for varying levels of care required was rather low. Disadvantageous environmental circumstances were not compensated by professional services or support provided by other sectors.

The personal assistance workforce: trends in supply and demand.

The workforce providing noninstitutional personal assistance and home health services tripled between 1989 and 2004, according to U.S. survey data, growing at a much faster rate than the population needing such services. During the same period, Medicaid spending for such services increased dramatically, while both workforce size and spending for similar services in institutional settings remained relatively stable. Low wage levels for personal assistance workers, which have fallen behind those of comparable occupations; scarce health benefits; and high job turnover rates highlight the need for greater attention to ensuring a stable and well-trained workforce to meet growing demand.

The Cash and Counseling Demonstration and Evaluation: focus groups inform design of a consumer-directed cash option.

The purposes of the study were to explore consumer preferences for a cash option, to inform the ongoing CCDE survey and program design, and to identify the messages that the CCDE and other states should include when informing consumers about a cash option. The preference study consisted of 3 parts: 11 pre-survey focus groups, a telephone survey in each of the 4 participating states, and 16 post-survey focus groups. This article highlights unique results from pre- and post-survey focus groups. Focus group discussions were audiotaped and videotaped and transcribed. Transcripts were manually coded and text was clustered according to the moderator's guide questions and some new and recurrent themes that emerged. Overall, focus group participants, including elders, expressed positive feelings about the CCDE, especially about having a role in hiring workers and determining the workers' schedules and responsibilities. Focus groups provided important lessons about features to highlight when presenting program information to potential consumers and their families. Program planners must also bear in mind consumer concerns, especially considering that less than 10% of eligible Medicaid consumers volunteered for the cash option. These findings will be useful in guiding other states as they develop new cash and counseling programs, especially those in the current Cash and Counseling replication project.

Older adults' reports of formal care hours and administrative records.

PURPOSE: Personal assistance care is a Medicaid benefit in New York, but few data are available on its prevalence and contribution to home care. We examined these issues in a New York City sample by assessing older adults' reports of weekly home care hours and Medicaid billing records. DESIGN AND METHODS: With help from New York City's Human Resources Administration, we identified all respondents in an ongoing population-based survey of Medicare enrollees who were receiving Medicaid-reimbursed personal assistance care in 1996. RESULTS: Of respondents in the sample, 10.3% (185 of 1,902 alive through 1996) had Medicaid claims for personal assistance care. The mean was 46.1 hr/week for reported hours and 40.1 hr/week for administrative claims. Accuracy of reported hours was evident in a high correlation (r =.91; p <.001) between respondent reports and authorized claims, and a consistently high and mostly constant ratio of billed to reported hours across all categories of activities of daily living disability. IMPLICATIONS: In this urban, low income, and mostly minority sample, older adults' reports of weekly formal care hours were valid when matched against administrative records. Respondent reports of formal care hours were valid even in complex care situations.

Improving the quality of Medicaid personal assistance through consumer direction.

As states seek to improve home and community-based services for people with disabilities, many are incorporating consumer-directed supportive services into their Medicaid programs. The national Cash and Counseling Demonstration uses a randomized design to compare an innovative model of consumer direction with the traditional agency-directed approach. This paper presents findings from the first demonstration program to be implemented, in Arkansas. Our survey of 1,739 elderly and nonelderly adults showed that relative to agency-directed services, Cash and Counseling greatly improved satisfaction and reduced most unmet needs. Moreover, contrary to some concerns, it did not adversely affect participants' health and safety.

Estimating paid and unpaid hours of personal assistance services in activities of daily living provided to adults living at home.

OBJECTIVE: To estimate the total hours of paid and unpaid personal assistance of daily living provided to adults living at home in the United States using nationally representative household survey data. DATA SOURCES: The Disability Followback Survey of the National Health Interview Survey on Disability (NHIS-D) conducted from 1994 to 1997. DATA COLLECTION/EXTRACTION METHODS: Data were obtained on persons receiving help with up to 5 ADLs and 10 IADLs, for up to 4 helpers, including the activities they helped with, whether the helper was paid or not, and the number of hours of help provided in the two weeks prior to the survey. The sample consists of 8,471 household-resident adults ages 18 and older receiving help with personal assistance. About 22 percent of the sample has missing data on hours, which we impute by multiple regression models using demographic, ADL, and IADL variables. FINDINGS: We estimate that 13.2 million noninstitutionalized adults receive an average of 31.4 hours per week of personal assistance in ADLs and IADLs per week, with 3.2 million people receiving an average of 17.6 hours of paid help and 11.7 million receiving an average of 30.7 hours of unpaid help. More persons ages 18-64 received help than those ages 65 and older (6.9 versus 6.2 million), but working-age recipients had fewer hours (27.4 versus 35.9) per week, due in part to less severe levels of disability. CONCLUSIONS: Personal assistance provided to adults with disabilities amounts to 21.5 billion hours of help per year, with an economic value in 1996 approaching $200 billion. Only 16 percent of this total is paid, representing $32 billion in home health services spent annually. This study, the first to estimate hours of assistance for both working-age and older adults, documents that older persons are more likely to receive paid personal assistance, while working-age people rely to a greater extent on unpaid help. This study begins to articulate the division of labor in the provision of personal assistance. Estimates of paid and unpaid hours of help by number of ADLs should inform policy concerning eligibility boundaries in long term care.

Use of unpaid and paid home care services among people with HIV infection in the USA.

This paper examines utilization of paid and unpaid home health care using data from a nationally representative sample of HIV-positive persons receiving medical care in early 1996 (N = 2,864). Overall, 21.0% used any home care, 12.2% used paid care and 13.6% used unpaid care. Most (70.0%) users of home care received care from only one type of provider. Substantially more hours of unpaid than paid care were used. We also found evidence of a strong association between type of service used and type of care provider: 62.4% of persons who used nursing services only received paid care only; conversely, 55.5% of persons who used personal care services only received care only from unpaid caregivers. Use of home care overall was concentrated among persons with AIDS: 39.5% of persons with AIDS received any home health care, compared to 9.5% of those at earlier disease stages. In addition to having an AIDS diagnosis, logistic regression analyses indicated that other need variables significantly increased utilization; a higher number of HIV-related symptoms, lower physical functioning, less energy, a diagnosis of CMV and a recent hospitalization each independently increased the odds of overall home care utilization. Sociodemographic variables had generally weak relationships with overall home care utilization. Among users of home care, non-need variables had more influence on use of paid than unpaid care. Both paid and unpaid home health care is a key component of community-based systems of care for people with HIV infection. The results presented in this paper are the first nationally representative estimates of home care utilization by persons with HIV/AIDS and are discussed with reference to policy and future research.

State Medicaid programs offering personal care services.

Two Medicaid programs offer personal care services: (1) the Title XIX Personal Care Services (PCS) optional State plan benefit; and (2) the 1915(c) home and community-based services (HCBS) waivers. By 1998-1999, 26 States offered the PCS optional State plan benefit; 45 offered personal care services via a waiver(s). Nationwide, the former program was larger. The latter was the more popular administrative mechanism, possibly because it more reliably controls growth. States vary dramatically in terms of Medicaid personal care. Medicaid personal care participants per 1,000 State population ranged from 7.33 to 0.04. Per capita expenditures ranged from $91.21 to $0.02.

Life without the venipuncture benefit: one agency's experience.

The Balanced Budget Act of 1997 included legislation that profoundly affected many residents of the community served by Visiting Health Professionals, Inc. of North Carolina. This legislation not only eliminated coverage for the nursing visit for venipuncture, but also ended coverage for all home health aide visits to these patients for personal care.

Working caregivers. A growing market.

By searching for ways to make themselves more valuable, home care agencies often build bridges to their communities through identifying new services to offer. Agencies that begin to develop work-family balance programs will find themselves ahead of the curve. They make themselves invaluable to companies by providing services that make employees happier and healthier.