Medicaid Home and Community-Based Services: How Consumer Access Is Restricted by State Policies

State Medicaid programs have expanded home and community-based services (HCBS). This article compares trends and variations in state policies for Medicaid HCBS programs in 2005 and 2010. State limitations on financial eligibility criteria and service benefits have remained stable. Although the use of consumer direction, independent providers, and family care providers has increased, some states do not have these options. The increased adoption of state cost control policies have led to large increases in persons on waiver wait lists. Access could be improved by standardizing and liberalizing state HCBS policies, but state fiscal concerns are barriers to rebalancing between HCBS and institutional services.     

An Examination of the Woodwork Effect Using National Medicaid Long-Term Services and Supports Data

A common concern in long-term services and supports (LTSS) policy is the “woodwork effect,” which has two components: (1) more people will use publicly funded services if access to home- and community-based services (HCBS) is expanded; and (2) the additional beneficiaries will increase the growth rate of LTSS expenditures. Medicaid LTSS beneficiary and utilization data starting in 1999 indicate modest growth in beneficiaries and expenditures, after adjusting for inflation and the number of people with functional impairments. The data do not provide strong evidence that the shift in Medicaid funding toward HCBS significantly increased or decreased overall Medicaid LTSS spending.     

Comparing States' Medicaid Nursing Facilities and Home and Community-Based Services Long-Term Care Programs: Quality and Fit with Inclination,Capacity, and Need

States employ home and community-based services (HCBS) increasingly in Medicaid support of long-term care and rely less on nursing facilities. We examine how states' nursing facilities and HCBS programs compare and whether states' long-term care responses match their ideological inclination toward, material capacity for supporting, and their citizens' need for these public social programs. We use cross-sectional panel data on structural, process, and outcome quality for nursing facilities and HCBS congregate residential programs. We rank states, correlate these measures, and use regression to link inclination, capacity, and need to quality. We find that states' nursing facility and HCBS program quality are not closely related and that state HCBS congregate residential program quality is independent of inclination, capacity, and need. This latter result underscores a need for uniform HCBS standards and better data on quality.     

Change and Inertia in the New York State Medicaid Personal Care Services Program: An Institutional Case Study

This study analyzes how competing logics (belief systems) of stakeholders have influenced patterns of change and inertia in the development of the New York Medicaid Personal Care Services (PCS) program. A case-study methodology was used to collect documents, statistics, and interview data from four key stakeholder groups: state and city officials, PCS agencies, a labor union, and consumer advocates covering the period 1999 to 2005. The New York PCS program is one of the oldest, largest, and most stable programs in the United States. Its early unionization of workers resulted in relatively generous wages and benefits and made New York number one nationally in PCS spending per capita. In spite of wide support from stakeholder groups, the overall number of participants has gradually declined since 1999. A consumer-directed model of personal care developed in 1995 challenged the status quo and has grown steadily. Resistance by public officials, agency providers, and union representatives to the consumer-directed model has resulted in a small program that is often targeted toward individuals labeled “difficult to serve.” Dominant stakeholders in New York have ensured a stable personal care program that has resisted change and led to program inertia.     

Chapter 3 Residential Care Facilities for the Elderly

Abstract

Residential Care Facilities for the Elderly (RCFEs), known as board and care homes, are licensed in California and many other states for non-medical care in the community. RCFEs are examined here to provide illustrative issues in the definition of types of long-term residential care. The research examines physical functioning, social supports, and course of residential placement for 109 RCFE residents (mean age 84 years). A significant portion of the residents had personal assistance needs not usually provided at the RCFE level (75% assistance with medication, 52% used walking aids, 29% assistance in bathing). Additionally, a third of the residents had restricted social supports and social activity. Residents report declines in functioning and support as reasons for moving to residential care. Length of residence in the facility (range less than a year to 15 years) was not related to physical functioning or social activity. These findings do not support “aging in place,” within the facility, as the rationale for increased need for assistance in residential care. Implications include the need to maintain the social model of residential care ample for the majority of residents while assuring the availability of a higher need for assistance of a significant portion of the residential care population.     

HCBS Spending and Nursing Home Admissions for 1915(c) Waiver Enrollees

Medicaid waiver programs for home- and community-based services (HCBS) have grown rapidly and serve a population at high risk for nursing home (NH) admission. This study utilized the Medicaid Analytic Extract Personal Summary File and the NH Minimum Data Set and tested whether higher levels of per-beneficiary HCBS spending were associated with (1) lower risk of long-term (90+ days) NH admission and (2) higher functional/cognitive impairment at admission for new enrollees in 1915(c) aged or aged and disabled waiver programs. Waiver enrollees in states and counties with higher HCBS spending were found to have lower risk of long-term NH admission and greater functional impairment at NH admission compared to waiver enrollees in states and counties with lower spending. This indicates that higher per-enrollee HCBS spending may enable waiver enrollees to remain in the community until their functional impairment becomes more severe.     

Resource Effects on Access to Long-Term Care for Frail Older People

Abstract

Access to long-term care depends primarily on personal resources, including family members and income, and on external resources, including Medicaid and Medicare. This study investigates how resources affect frail older individuals' access to long-term care, with a focus on Black and White widows. Data from the 1989 National Long-Term Care Survey is used, in conjunction with state-level Medicaid and Medicare reimbursement rates for nursing home and home health care, to estimate the likelihood of five types of care arrangements. Results show that children are a primary resource for unmarried individuals in maintaining access to informal care. Income effects are nonlinear in relation to nursing home care: increasing incomes below the mean income are associated with decreasing probabilities of nursing home care, while increasing incomes above the mean are associated with increasing probabilities of nursing home care. Income and Medicaid effects are interrelated, with nonlinearities associated with income having the potential to adversely affect some older persons' ability to access nursing home care.     

Medicaid State Plan Personal Care Services

Abstract

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.     

State Discretion and Medicaid Program Variation in Long-Term Care

Summary

Although federal statutes and regulations establish the broad parameters within which state Medicaid programs operate, the federal government grants states substantial discretion over Medicaid and Medicaid-funded long-term care. An appreciation of resulting cross-state variation in Medicaid program characteristics, however, has been lacking in the ongoing debate over whether the federal government should further devolve responsibility for caring for the poor and disabled elderly to the states. To better inform this discussion, therefore, this article documents considerable variation, not only in terms of Medicaid program spending and recipients, but also in terms of strategies chosen to reform long-term care services and financing. Since there is little doubt that states take full advantage of current levels of discretion, advocates of devolution may want to reassess their views to consider whether existing variation has resulted in inequities addressable only through more, not less, federal involvement.     

Predicting State Investment in Medicaid Home- and Community-Based Services, 2000–2011

Although state use of Medicaid home- and community-based services (HCBS) to provide long-term services and supports to older adults and individuals with physical disabilities continues to increase, progress is uneven across states. We used generalized linear models to examine state factors associated with increased allocation of Medicaid dollars to HCBS for the period 2000 to 2011. We observed enhanced growth in states that began the period with limited investment in HCBS, as reflected in significant year trends among these states. The political environment appeared to be an important influence on states’ investment for states with limited initial allocation to HCBS, as was housing affordability, a policy amenable variable. There continues to be wide variation in states’ relative investment, calling for additional policy attention and research.     

Medicaid Funding for Assisted Living Care: A Five-State Examination

Medicaid waiver programs financing assisted living care are examined in five states to gain insights about program implementation, accomplishments, and challenges. Documents, augmented with stakeholder interviews, are used to describe income eligibility, options for supplementing payments to facilities, risk adjustment payment levels, and participation. Needs determination and waiver-based payments are in place. Eligibility and funding levels are complicated by room and board allocations that are linked to the federal benefit rate for Supplemental Security Income. Provider participation may be diminishing. Many recipients have to accept shared occupancy as program payments are insufficient for single units.     

Activity Engagement in Residential Care Settings: Findings from the National Survey of Residential Care Facilities

Assisted living and similar residential care is an important source of care for elders, including those with dementia. Meaningful activities may help residents maintain function, improve self-esteem, and enhance quality of life. Using data from the 2010 National Survey of Residential Care Facilities, this study identifies the extent of resident engagement in different types of activities; examines the extent to which cognitive status, other resident characteristics, and residential care community characteristics relate to activity engagement; and, among cognitively impaired residents, assesses whether being in dementia-specific settings is associated with activity engagement. Compared with persons without cognitive impairment, those with severe cognitive impairment are less likely to go on outings (79% versus 36%) and talk with family and friends (85% versus 72%). Residents with mild to severe cognitive impairment have higher participation in leisure activities than other residents if they live in dementia-specific settings (73% higher) than those who do not.     

The Woodwork Effect in Medicaid Long-Term Services and Supports

This paper examines annual real per capita Medicaid long-term services and supports (LTSS) expenditures (in 2010 $) over the period 1995 to 2010. Medicaid community LTSS expenditures increased substantially. If that trend constituted a woodwork effect, expenditures on institutional services should have declined more slowly than community expenditures increased, resulting in total expenditures increasing over time. Such a woodwork effect is observed for the population with intellectual and developmental disabilities (IDD) but not for the non-IDD population, composed of persons with disabilities other than IDD, including older persons. During this time period, the goals for serving people with IDD changed; institutional and community cost-neutrality rules were relaxed (and with that concerns over a woodwork effect), and instead goals of community involvement and participation were emphasized for all eligible persons. For the non-IDD population, tighter adherence to cost-neutrality rules and controls over nursing home reimbursements may have helped avoid a woodwork effect as community expenditures increased. With the passage of the Americans with Disabilities Act in 1990, goals have changed for people with disabilities of all ages, and the notion of a simple trade-off between institutional and community service costs that constitutes the woodwork effect must be complemented with a much broader idea of cost analysis that values independence and community participation for people with disabilities of all ages.     

Experiences of Informal Caregivers of Older Adults Transitioned From Nursing Homes to the Community Through the Money Follows the Person Demonstration

This study examined experiences of 156 informal caregivers of older adults who transitioned to the community through the Connecticut Money Follows the Person (MFP) Rebalancing Demonstration after prolonged nursing home stays. Caregiver burden, positive aspects of caregiving, depressive symptoms, anxiety, and comparative subjective stress were examined in relation to caregiver demographics and care receiver characteristics with a cross-sectional survey. Caregivers reported low burden, depressive symptoms, and anxiety, and fairly high levels of positive aspects of caregiving and satisfaction with community services. Most caregivers were less stressed compared to the time the care recipient was in, or before they entered, a nursing home. Live-in caregivers experienced more positive aspects of caregiving, but adult children reported higher burden than other caregivers. Unmet service needs also increased caregiver burden. Programs like MFP are a viable option with broadly positive outcomes from a caregiver’s perspective. Enthusiasm for increasing access to community care is growing for older adults who otherwise would reside in nursing homes for extended periods. Identifying unmet service needs and needs for targeted functional support could further enhance caregiver experiences and contribute to the successful transition of older adults to the community.     

Is There a Woodwork Effect? Addressing a 200-Year Debate on the Impacts of Expanding Community-Based Services

In U.S. social welfare history, many have suggested that if benefits were too attractive, consumers would come out of the woodwork to take advantage of the opportunity. Clinical trials have provided evidence of the woodwork effect’s existence, suggesting caution when expanding home- and community-based services (HCBS). However, it is unclear whether these studies are best suited to assess whether a system-level effect occurs. Using state and federal data tracking Ohio’s long-term services and support (LTSS) system from 1995 to 2015, this paper examines changes in the utilization rates and expenditures of Medicaid LTSS to explore whether a woodwork effect occurred as Ohio moved to improve its LTSS system balance (80% Nursing Home [NH], 20% HCBS) to (49% Nursing Home [NH], 51% HCBS). After accounting for population growth of individuals older than 60 and those with two or more impairments in activities of daily living, there was no change in utilization rates of older people with severe disability (1995: 491 per 1000 population, 2015: 495 per 1000 population) or overall LTSS expenditures (1997: $2.7 million [in 2013 dollars], 2013: $2.9 million). Our results suggest that states can make significant strides in HCBS expansion without increasing the overall long-term services utilization rate.     

Experience,Knowledge, and Concerns About Long-Term Services and Supports: Implications for Financing Reform

Using the 2014 Survey of Long-Term Care Awareness and Planning, this article examines Americans’ experiences, knowledge, and concerns about long-term services and supports (LTSS) and actions they are willing to take if they become disabled. The survey included 15,298 non-institutionalized respondents aged 40 to 70 years drawn from a nationally representative sample. Although many reported some experience with LTSS, knowledge of how LTSS worked was low. Respondents reported widespread concerns about becoming disabled. They preferred informal care over paid care, with a strong desire to remain in their homes. These results can be used to design reform initiatives and to motivate political support.     

The Seniors' Outdoor Survey (SOS Tool): A Proposed Weighting and Scoring Framework to Assess Outdoor Environments in Residential Care Settings

Spending time outdoors offers substantial health benefits for older adults. However, in long-term care settings, outdoor areas may fail to adequately support elderly residents' needs and preferences. The Seniors' Outdoor Survey (SOS Tool) was recently developed to help users evaluate outdoor areas and indoor–outdoor connections in residential facilities for seniors, by rating 60 environmental features on a 1–7 scale. This article proposes a weighting strategy to approximate the relative importance of different items on the tool, according to their potential level of support for resident usage and preferences. A standardized scoring system will allow multiple stakeholders to apply the results to research, design, construction, and renovation projects.     

Workforce Issues in Residential Care Facilities in Rural China

This study examined contemporary frontline workforce issues related to residential care for elders in rural China. Residential facilities in rural China are in transition from exclusively providing shelter to childless elders to providing long-term care for frail elders. These facilities are also under pressure to improve the quality of services that they provide. The study is based on in-depth interviews with administrators and field observations of facilities. The study focused on the following issues related to the workforce: recruitment and retention, training, work environment, workforce organization, regulations, compensation, and career ladders. The implications of resident characteristics for demands on the work force were examined. The study found that lack of skilled personnel is one of the major reasons that the overwhelming majority of facilities deny admission to frail and demented elders. Improving workers’ skill is critical if these facilities are to meet the increasing demand for institutional long-term care needs.     

Vertical Axes on the Long-Term Care Continuum

Abstract

As the continuum of long-term care has expanded, public funding has not accompanied new care options. I detail access, provider profits and resources, and care quality in two types of residential care that fall in the center of the continuum, assisted living and board and care. These two options provide examples of how limited public funding leads to vertical axes, which represent access to services, the resources providers draw on to give care, and the quality of long-term care services, at each service point on the long-term care continuum.