Key goals and indicators for successful aging of adults with early-onset disability.

Substantial improvements have occurred in the longevity of several groups of individuals with early-onset disabilities, with many now surviving to advanced ages. This paper estimates the population of adults aging with early-onset disabilities at 12-15 million persons. Key goals for the successful aging of adults with early-onset disabilities are discussed, emphasizing reduction in risks for aging-related chronic disease and secondary conditions, while promoting social participation and independence. However, indicators suggest that elevated risk factors for aging-related chronic diseases, including smoking, obesity, and inactivity, as well as barriers to prevention and the diminished social and economic situation of adults with disabilities are continuing impediments to successful aging that must be addressed. Increased provider awareness that people with early-onset disabilities are aging and can age successfully and the integration of disability and aging services systems are transformative steps that will help adults with early-onset disability to age more successfully.

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.

Medicaid home- and community-based services: impact of the affordable care act.

The Affordable care Act (ACA) legislation of 2010 has three important voluntary provisions for the expansion of home- and community-based services (HCBS) under Medicaid: A state can choose to (1) offer a community first choice option to provide attendant care services and supports; (2) amend its state plan to provide an optional HCBS benefit; and (3) rebalance its spending on long term services and supports to increase the proportion that is community-based. The first and third provisions offer states enhanced federal matching rates as an incentive. Although the new provisions are valuable, the law does not set minimum standards for access to HCBS, and the new financial incentives are limited especially for the many states facing serious budget problems. Wide variations in access to HCBS can be expected to continue, while HCBS will continue to compete for funding with mandated institutional services.

Demographics and trends in wheeled mobility equipment use and accessibility in the community.

This article presents a profile of household-resident U.S. adults using wheeled mobility equipment (WME) in 2005, trends in WME use from 1990 to 2005, and data on accessibility features and problems from 1994-97. Data were obtained from the Survey of Income and Program Participation (SIPP) and the National Health Interview Survey on Disability (NHIS-D). Compared to the general population, WME users are more likely to be older, female, and in poor health. Forty-four percent are working-aged, with twice the rate of poverty of the general population, and only 17% are employed. Mobility difficulty is the most significant predictor of WME use, but gender, race, poverty, and educational attainment are also significant predictors. From 1990-2005, WME use grew 5% per year, while mobility difficulty declined among the elderly and remained steady among working-age persons. This contrast suggests a reduction in unmet need for WME. In 1994-97, more than half of WME users had difficulty entering or exiting their homes, and one-third had accessibility problems outside their homes. Usage of home modification was low, with substantial unmet need. Regular national data collection on the use of WME and other mobility aids, their financing, and accessibility issues is warranted.

Long-term care: who gets it, who provides it, who pays, and how much?

Long-term care in the United States is needed by 10.9 million community residents, half of them nonelderly, and 1.8 million nursing home residents, predominantly elderly. Ninety-two percent of community residents receive unpaid help, while 13 percent receive paid help. Paid community-based long-term care services are primarily funded by Medicaid or Medicare, while nursing home stays are primarily paid for by Medicaid plus out-of-pocket copayments. Per person expenditures are five times as high, and national expenditures three times as high, for nursing home residents compared to community residents. This suggests that a redistribution of spending across care settings might produce substantial savings or permit service expansions.

The classic measure of disability in activities of daily living is biased by age but an expanded IADL/ADL measure is not.

OBJECTIVES: To evaluate, by age, the performance of 2 disability measures based on needing help: one using 5 classic activities of daily living (ADL) and another using an expanded set of 14 activities including instrumental activities of daily living (IADL), walking, getting outside, and ADL (IADL/ADL). METHODS: Guttman and item response theory (IRT) scaling methods are used with a large (N = 25,470) nationally representative household survey of individuals aged 18 years and older. RESULTS: Guttman scalability of the ADL items increases steadily with age, reaching a high level at ages 75 years and older. That is reflected in an IRT model by age-related differential item functioning (DIF) resulting in age-biased measurement of ADL. Guttman scalability of the IADL/ADL items also increases with age but is lower than the ADL. Although age-related DIF also occurs with IADL/ADL items, DIF is lower in magnitude and balances out without causing age bias. DISCUSSION: An IADL/ADL scale measuring need for help is hierarchical, unidimensional, and unbiased by age. It has greater content validity for measuring need for help in the community and shows greater sensitivity by age than the classic ADL measure. As demand for community services is increasing among adults of all ages, an expanded IADL/ADL measure is more useful than ADL.

Do noninstitutional long-term care services reduce Medicaid spending?

Medicaid spending on home and community-based services (HCBS) has grown dramatically in recent years, but little is known about what effect these alternatives to institutional services have on overall long-term care costs. An analysis of state spending data from 1995 to 2005 shows that for two distinct population groups receiving long-term care services, spending growth was greater for states offering limited noninstitutional services than for states with large, well-established noninstitutional programs. Expansion of HCBS appears to entail a short-term increase in spending, followed by a reduction in institutional spending and long-term cost savings.

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.

Living quarters and unmet need for personal care assistance among adults with disabilities.

OBJECTIVES: This study used a person-environment (P-E) framework to examine individual capabilities and social and physical environmental attributes for their association with unmet assistance needs in activities of daily living (ADLs). Analyses were replicated among five ADLs (bathing, dressing, transferring, toileting, eating) and test the relative risk of apartment dwellers compared to those living in houses. METHODS: Data were obtained from the National Health Interview Survey, Supplement on Disability Followback Survey. Analyses consisted of a nationally representative sample of aged and nonaged adults with one or more ADL limitations. RESULTS: Slightly less than 1 in 5 subjects with a specific ADL limitation had unmet needs for that ADL. This was true across all ADLs. The likelihood of unmet ADL assistance increased with the number of ADL limitations and other health status indicators. It was at least 50% higher among those living in apartments than in houses and higher among Hispanics. There were no differences by age or gender. DISCUSSION: The P-E framework postulates that individuals seek settings matched to their capabilities, but findings suggest that many are at risk for adaptation at any one time. Specific risk factors are identified. Selection factors like preferences, expectations, and adaptation options available have not been directly measured.

Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences.

OBJECTIVES: Perceived unmet need for personal assistance services (PAS) in activities of daily living (ADLs) and instrumental ADLs and its association with reduced hours of help received and with adverse consequences due to lack of help are examined for adults aged 18 and older using data from the 1994-1997 National Health Interview Survey on Disability. METHODS: A two-part multivariate regression model of the probability of PAS use and hours of help received was developed to control for need level, living arrangements, and other characteristics that may differ between persons with met and unmet needs and to determine the shortfall in hours associated with unmet need. RESULTS: Individuals with unmet need for personal assistance with two or more of the five basic ADLs have a shortfall of 16.6 hours of help per week compared with those whose needs are met. The relative shortfall is twice as great for persons who live alone as for those who live with others. People who live alone and have unmet needs fare worse than people with unmet needs who live with others, and both groups are more likely than those whose needs are met to experience adverse consequences, including discomfort, weight loss, dehydration, falls, burns, and dissatisfaction with the help received. DISCUSSION: Overall, just 6.6% of needed hours are unmet among the 3.3 million people needing help in two or more ADLs. We estimate the annual cost of eliminating unmet need among persons with incomes under 300% of the Supplemental Security Income level between 1.2 and 2.7 billion dollars for those living alone and from 2.2 to 7.1 billion dollars for those living with others.

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.