Working age Medicare beneficiaries with disabilities: population characteristics and policy considerations.
Disabled persons (Employment)
Medical policy (Management)
Medical policy (Services)
Tuleu, Iulia Balbach
|Publication:||Name: Journal of Health and Human Services Administration Publisher: Southern Public Administration Education Foundation, Inc. Audience: Academic Format: Magazine/Journal Subject: Government; Health Copyright: COPYRIGHT 2007 Southern Public Administration Education Foundation, Inc. ISSN: 1079-3739|
|Issue:||Date: Winter, 2007 Source Volume: 30 Source Issue: 3|
|Topic:||Event Code: 200 Management dynamics; 530 Labor force information; 360 Services information Computer Subject: Company business management|
|Product:||Product Code: 9105133 Social Service Support-Handicapped NAICS Code: 92313 Administration of Human Resource Programs (except Education, Public Health, and Veterans' Affairs Programs)|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
Compared to older beneficiaries, disabled workers who become eligible for Medicare 25 months after they are deemed eligible for Social Security Disability Insurance (SSDI), receive little research attention or policy consideration. This is unfortunate, because of the special medical and vocational needs, high healthcare costs, and rapid growth of this population. Although disabled workers comprise only 14.1% of the total Medicare population, they account for about 17% ($71.6 billion) of total program expenditures. This review article finds that disabled workers are a medically heterogeneous population, with relatively high rates of psychiatric and cognitive conditions. Poor health, low incomes, and lack of access to affordable supplemental coverage make this group particularly vulnerable to program limitations and policy changes. Coverage gaps and co-payments may limit access to critical health services, including preventive services, rehabilitation, adaptive technology, personal assistance, and prescription drugs. Access to stable and affordable health insurance coverage is an essential part of return to work programming for SSDI beneficiaries.
In terms of research attention and policy consideration, younger Medicare beneficiaries with work disabilities "have been largely overshadowed by the elderly--in numbers, costs and political clout (p. 242)" (Foote & Hogan, 2001). Beneficiaries aged 18-64, who currently comprise about 14.1% of the total program caseload, were at best a footnote in the deliberations leading up to passage of the 2003 Medicare Modernization Act (MMA) (Briesacher, 2002). This review paper analyzes the limited research and commentary on younger Medicare beneficiaries who become eligible for Medicare after they are deemed eligible for Social Security Disability Insurance (SSDI). This group has a high prevalence of chronic disease, and accounts for a disproportionate share of health services. The Medicare program does not cover some important disability support services, and some Medicare policies are at odds with the Social Security Administration's efforts to encourage SSDI beneficiaries to return to work. Understanding the relationship between the Medicare and SSDI programs and the special needs of working age Medicare beneficiaries is the first step in providing responsive policies and programs for this critical population.
PROGRAM CONTEXT: THE INTERSECTION OF MEDICARE AND SSDI
To understand the policy issues surrounding younger Medicare beneficiaries, it is important to consider the evolution and structure of the Medicare and Social Security Disability Insurance (SSDI) programs and the ways that these two programs intersect. The following subsections provide a brief overview of the two programs. Enrollment and expenditure data are derived from recent government reports, but these figures may be dated due to lags in collection and publication--readers are encouraged to visit the websites of the Centers for Medicare and Medicaid Services (http://www.cms.hhs.gov/) and the Social Security Administration (http://www.ssa.gov/policy/).
The Medicare program was established in 1965, and benefits were extended to younger Disability Insurance (DI) beneficiaries in 1972. Medicare now provides health insurance for about 43 million elderly and disabled Americans, and total program costs are anticipated to reach $374 billion in 2006 (approximately 14% of the federal budget) (Cubanski, Voris, Kitchman, Neuman, & Potetz, 2005). Medicare Part A, the Hospital Insurance Program, covers inpatient hospital care, while optional Medicare Part B, the Supplemental Medical Insurance Program, covers physician services, preventive services, and outpatient care.
Most Medicare beneficiaries (almost 90%) have some sort of supplemental health insurance, with the most common source being employer-sponsored coverage (35%), followed by individually-purchased "Medigap" plans (Cubanski et al., 2005). About 17% of beneficiaries are "dual-eligibles," having household incomes low enough to qualify for state Medicaid benefits as well as federal Medicare benefits (Cubanski et al., 2005).
Medicare Part C, established in 1997, allowed private, managed care providers to offer Medicare Advantage (MA) plans. Estimates suggest that roughly 13% of beneficiaries currently participate in MA plans (Cubanski et al., 2005). Recent regulatory and reimbursement changes in the 2003 Medicare Modernization Act (MMA) should help stabilize and expand the number of beneficiaries in managed care and preferred provider plans (Gold, 2005).
Social Security Disability Insurance (SSDI)
The SSDI program, established in 1956, provides cash benefits to over 6.8 million American workers, at a total annual cost of about $66 billion (Social Security Administration, 2004a). About 86% of SSDI beneficiaries are workers deemed eligible because of their own disabilities, the remaining 14% are spouses and dependent children of the worker. The average monthly benefit in 2003 was about $862 (Social Security Administration, 2004a).
The SSDI program has grown rapidly in recent years (Social Security Administration, 2006), a trend attributed to various factors, including general population growth (Ycas, 1995), enrollment of workers at younger ages (Rupp & Stapleton, 1995), greater longevity of workers (Riley, Lubitz, & Zhang, 2003), SSA policy changes (Burkhauser, Butler, & Weathers, 2001), and dislocations and transformations of the U.S. labor market (Khan, Gerdtham, & Jansson, 2004; Yelin & Katz, 1994). Recent efforts to contain this program growth through work incentive programs and early intervention, and the role of health insurance in these programs, will be discussed later in this article.
Applying for disability programs like SSDI is a lengthy and uncertain process. To be deemed eligible, an applicant must go through a multi-stage evaluation to demonstrate "the inability to engage in any substantial gainful activity (SGA) because of a medically determinable physical or mental impairment (s)" (Social Security Administration, 2001a). Bilder and Mechanic (2003, p. 76) describe the process as:
The preliminary SSA review of applications takes about four months, and more than half of the applications are denied. Subsequent appeals, which can take a year or longer, push the eventual allowance rate for applicants to about 62% (Social Security Administration, 2004a). Given the stringency of the eligibility criteria and the complexity of the application process, it is probably not surprising that few SSDI beneficiaries choose to return to work and give up their eligibility status (Berkowitz & Greene, 1989). In 2003, about 450,000 beneficiaries were terminated from the program, but 45% did so because they reached age 65 and were transferred to the senior benefits program, and 41% died (Social Security Administration, 2004a). Only about 6% were terminated because their earned incomes exceeded SGA criteria levels (Social Security Administration, 2004a).
SSDI beneficiaries become eligible for Medicare 25 months after they begin receiving Social Security benefits (Chirikos, 1995). Roughly 19% of SSDI beneficiaries are currently in this waiting period, and 32% of those beneficiaries have no health insurance at all (Dale & Verdier, 2003). About one of six SSDI beneficiaries have incomes low enough to qualify for Supplemental Security Income (SSI), and are consequently eligible for Medicaid benefits (Social Security Administration, 2004a).
A PROFILE OF DISABLED WORKERS WHO RECEIVE MEDICARE
Aside from their age, disabled workers differ from older beneficiaries in a number of important ways. Unfortunately, published, side-by-side comparisons of the two groups tend to be limited to simple descriptive categories and somewhat dated. Moreover, some comparisons aggregate all beneficiaries under age 65, which may include spouses and adult children as well as disabled workers. Nonetheless, these studies reveal a heterogeneous population that has a disproportionate number of high use, high benefit cost Medicare recipients. Poor health, low incomes, and lack of access to affordable supplemental coverage make this group particularly vulnerable to program limitations and policy changes.
Sociodemographic and Health Characteristics
Compared to older beneficiaries, disabled workers are more likely to be male, more likely to be a member of a racial or ethnic minority group, and more likely to have annual incomes of less than $10,000 (Cubanski et al., 2005). Despite their younger ages, disabled workers are much more likely to describe their health as fair or poor, and to report higher levels of activity limitation (Davis & O'Brien, 1996). Within this population, mental disorders are the most common reason for work disability, followed by diseases of the musculoskeletal system, and mental retardation (Riley et al., 2003). Compared to seniors, younger beneficiaries are over twice as likely to have some cognitive or mental impairment (24% vs. 59%). The large proportion of enrollees with mental disorders and mental retardation is due in part to the relatively early entry and low mortality rates of adults with these conditions in the SSDI program (Riley et al., 2003).
Health care costs
Although disabled workers comprise only 14.1% of the total Medicare population, they account for about 17% ($71.6 billion) of total program expenditures (Cubanski et al., 2005). In 2002, younger beneficiaries incurred higher average per capita Medicare costs--$12,950/year versus $10,328/year for older beneficiaries (Riley et al., 2003). The proportion of beneficiaries incurring high medical costs (more than $50,000 in the preceding year) was higher for disabled workers than for seniors (6% vs. 4%) (Riley et al., 2003). Within the disabled worker population, severity of disability is positively associated with cost of care (Chan et al., 2002).
Health Care Access and Utilization
Disabled workers are hospitalized at the same rate as the general Medicare population (18% annually), but use of home health care is below the program average (4% vs. 6%) (Cubanski et al., 2005). Disabled workers are slightly more likely than seniors to not visit a physician at all during the preceding year (12% vs. 9%), and more likely to receive care in a hospital emergency department (29% vs. 20%) (Davis & O'Brien, 1996).
On average, younger beneficiaries receive more prescriptions per year than the elderly (34 vs. 25) and spend more on drugs ($1,284 vs. $841) (Briesacher, 2002). Because of their relatively high drug expenses and low incomes, disabled workers report higher rates of cost-associated prescription non-adherence (Kennedy & Erb, 2002).
In both younger and older groups of Medicare beneficiaries, severity of disability (i.e. number and type of activity limitations) is closely tied to utilization and cost of medical care (K. Liu, Wall, & Wissoker, 1997), home health care (K. Liu, Wissoker, & Rimes, 1998), prescription drugs (Chan et al., 2002), and preventive services (Chan et al., 1999).
Disabled workers report more barriers to health care and lower levels of satisfaction with the services received than their older counterparts (Davis & O'Brien, 1996; Iezzoni, Davis, Soukup, & O'Day, 2002), but there are also important differences within the disabled population. Compared to those with physical disabilities, beneficiaries deemed eligible for SSDI due to mental or psychiatric disorders are significantly less likely to have a usual source of medical care, more likely to say they had not received needed care, and less satisfied with the care they received (Rosenbach, 1995). Severity of activity limitation was also associated with access problems and dissatisfaction with services (Jha, Patrick, MacLehose, Doctor, & Chan, 2002).
Health Insurance Coverage
Disabled workers are more likely to rely solely on Medicare coverage than seniors (27% vs. 9%), and are much less likely to have private supplemental insurance (30% vs. 71%) (Davis & O'Brien, 1996). Barriers to private supplemental insurance for disabled workers include shorter and more sporadic work histories, which limit employer sponsored coverage, and the high costs and limited availability of individual Medigap plans (Burns, 2003).
Medicaid plays a large role in coverage among disabled workers--37% are dual eligibles, compared to 10% of seniors (Cubanski et al., 2005). Medicaid programs also cover some services critical to adults with disabilities but not covered by Medicare, including nursing home care, home and community-based personal assistance, and, until this year, prescription drugs. Coordination of these benefits is often challenging for this vulnerable population (Nemore, 2004; Ryan & Super, 2003), and the automatic enrollment of dual eligibles earlier this year was a cause for considerable concern among providers and advocates (Elliott, Majumdar, Gillick, & Soumerai, 2005).
Federal law requires companies offering Medicare Advantage plans to offer these benefits without restriction to Medicare beneficiaries under 65, but disabled workers are less likely to enroll (9%) than seniors (16%) (Cubanski et al., 2005). Disabled workers who enrolled in these plans reported better access and lower costs than those with traditional Medicare benefits though satisfaction rates were lower and access problems were higher among more severely disabled beneficiaries (Beatty & Dhont, 2001; Gold et al., 1997).
MEDICARE POLICY ISSUES FOR YOUNGER BENEFICIARIES
Waiting Period for Program Eligibility
The 25 month wait for Medicare coverage after SSDI benefits begin is clearly a hardship for many of the estimated 1.3 million beneficiaries in this benefit window, particularly those who lack any health insurance and those who pay high premiums for private plans or employer-based COBRA benefits (Dale & Verdier, 2003). Eliminating the waiting period would be expensive (Bye & Riley, 1989). Recent estimates put additional Medicare program costs for such initiative at $9 billion, though these costs would be partially offset by reductions in state and federal Medicaid expenditures (Riley, 2004).
New program costs should, however, be contrasted with the human costs of the current waiting period. In a series of focus groups and individual case studies, Williams et al (2004) clearly show that these costs are substantial:
Return To Work Programs
For decades, policymakers and advocates have struggled to address a troubling fact: once participants enroll in SSDI, nearly all of them stay in the program until they reach age 65 and receive regular retirement benefits. This has a significant impact on the size and cost of the program. Doubling the very small proportion of SSDI beneficiaries who return to work (e.g., from 0.5% to 1%) would return billions to the Social Security fund over the work life of those beneficiaries (General Accounting Office, 1999). Moreover, persistently low rates of disenrollment are inconsistent with the growing political consensus, bolstered by survey data, that most people with disabilities want to work and, with sufficient support services and adequate opportunities, can work (Findley & Sambamoorthi, 2004; Hanson, Neuman, Dutwin, & Kasper, 2003; Randolph, 2004).
In 1999, Congress passed the Ticket-to-Work and Work Incentives Improvement Act (TWWIIA), which extended new vocational support services to SSDI and SSI beneficiaries, adjusted earning formulas, and extended health insurance coverage for those returning to work (Social Security Administration, 2001b). Specific Medicare program changes included extension of coverage for working beneficiaries and a streamlined re-enrollment process (Social Security Administration, 2004b). Full implementation of TWWIIA was an integral part of the Bush Administration's New Freedom Initiative (Tingus, 2003).
Many states have established "Medicaid Buy-In" programs that allow beneficiaries to return to work and maintain Medicaid eligibility (Williams, Claypool, & Crowley, 2005), but the integration of program benefits for dual eligibles is a serious challenge for administrators and program participants (Nemore, 2004). Implementation of the new Medicare prescription drug benefit may prove particularly problematic, because Medicaid drug benefits are an important and heavily used part of these programs (S. Liu, Ireys, White, & Black, 2005). The Kansas Working Healthy Buy-In program, for example, has participants who will face higher drug costs and diminished work benefits as they transfer from state Medicaid benefits into private Medicare Part D plans (Hall, Moore, & Shireman, 2005). Despite the TWWIIA and related policy efforts, affordability, continuity and integration of health insurance coverage will remain concerns for SSDI enrollees contemplating a return to work (Weiner, 2003).
Medicare Part D
Medicare Part D, implemented earlier this year, is too new to evaluate, but preliminary research and policy commentary identify several program areas which should be monitored for potentially adverse impacts on poor and disabled beneficiaries (Elliott et al., 2005). The new drug benefit will clearly be helpful for many Medicare beneficiaries, particularly the estimated 27% who lacked any drug coverage (Donohue & Hanlon, 2005) and people who take certain anticancer drugs that were previously restricted (Bowman, Rousseau, Silk, & Harrison, 2006).
Among available drug plans, there is considerable variability in premiums, cost-sharing requirements, and coverage of specific drugs (Stuart et al., 2005). The most notorious limit in all these plans is the so-called "doughnut hole" in reimbursement (Rosenthal, 2004). Beneficiaries not deemed eligible for a low income subsidy receive partial coverage for prescription drugs up to an annual cap of $2,250, but are fully responsible for the next $2,850 in drug costs. If they exceed $5,100 in total drug costs in a given year, beneficiaries become eligible for catastrophic coverage. Disabled workers are not the only Medicare population at risk, but because of poor health, chronic conditions, and low incomes, these coverage gaps may disproportionately affect the health and well-being of younger beneficiaries (Lakdawalla, Bhattacharya, & Goldman, 2004; Saver, Doescher, Jackson, & Fishman, 2004; Schlosberg, 2004).
Healthcare consumers, including Medicare beneficiaries, are sensitive to drug prices, and often fail to fill prescriptions if out-of-pocket costs are perceived as high (Kennedy, Coyne, & Sclar, 2004; Mojtabai & Olfson, 2003). Beneficiaries with chronic conditions or disabilities are particularly vulnerable to such cost-associated nonadherance (Kennedy & Erb, 2002). Particularly for people with severe chronic conditions like HIV/AIDS, mental illness, and seizure disorders, "even short disruptions in drug regimens can have catastrophic consequences (p.6)" (Fineman et al., 2005).
Medicare prescription drug plans use a variety of mechanisms to contain total program expenditures, including restrictions in formularies, tiering of drugs into several levels (with increasing patient costs for higher tiered drugs), and various co-payment mechanisms (Hoadley, Hargrave, Cubanski & Neuman, 2006). A recent analysis of cost and coverage of drugs for HIV/AIDS in the state of Maryland revealed some troubling limitations in these standalone prescription drug plans (Cubanski, Neuman, Kates, Carbaugh, & Han, 2006). Cost-sharing differences across plans were significant and mainly due to different tier placement of drugs within the plan formulary--insurers are permitted to place certain high-cost drugs on "specialty" tiers, with considerably higher cost-sharing than other drugs. Additionally, individual plans charge different amounts for drugs in the initial benefit period, the doughnut hole, and even during the catastrophic coverage period. These plan differences will have significant implications for beneficiaries in terms of access to needed medications and out-of-pocket costs, and underscores the importance of choosing wisely when selecting among the different plans, especially since opting for a particular plan generally means that the beneficiary is locked in that plan for the remainder of the year.
Coverage Of Rehabilitation And Disability Support Services
Medicare covers a variety of important services for disabled workers, including inpatient rehabilitation (Verville & Chan, 2002), assistive technology (Carlson & Ehrlich, 2006; Wolff, Agree, & Kasper, 2005), and home health care (Liu, Manton, & Aragon, 2000). However, it also fails to cover a number of critical disability services, including personal assistance (Kennedy, 1993) and comprehensive disease management programming (Daaleman, 2006).
Medicare is the largest single source of funding for inpatient rehabilitation, but new prospective payment mechanisms (Verville & Chan, 2002) and categorical coverage restrictions (Braddom, 2005) have been a source of frustration for providers and consumers. The "75% rule," which requires that three-quarters of rehabilitation hospital admissions in any given week be for treatment of one of thirteen recognized diagnostic categories, is particularly controversial because it ignores variability in patient admissions and the legitimate rehabilitation needs of people with conditions other than those diagnostic categories (Braddom, 2005).
Medicare is also the single largest funder of assistive technology like mobility aids (Wolff et al., 2005), hearing aids and other sensory technologies (Russell, Hendershot, LeClere, Howie, & Adler, 1997). However, other important assistive technologies like home adaptations, vehicle modifications, and information technology are not covered (Carlson & Ehrlich, 2006; LaPlante, Hendershot, & Moss, 1992).
Medicare home health care expenditures increased dramatically with the advent of prospective hospital payment in the late 80s, but leveled after reimbursement caps were established in the 1990s (Liu et al., 2000). The most frustrating aspect of the home health benefit for disability advocates is its limited duration and linkage to hospitalization (Kennedy, 1993). A few demonstration projects are investigating the utility of Medicare benefits for personal assistance vouchers (Meng et al., 2006), but the great majority of expenditures go to what advocates describe as a medical model of personal assistance, rather than the independent living (Batavia, DeJong, & McKnew, 1991) or disability model (Kafka, 1998) which emphasizes consumer control and flexibility of disability support services.
Finally, Medicare has been criticized for failing to adequately use disease management programming, despite the high prevalence and costs of chronic conditions like diabetes (Daaleman, 2006). Appropriate use of screening, preventive services, medication management, and behavioral and dietary interventions have the potential to reduce the severity of chronic conditions and the incidence of secondary conditions for disabled workers and other Medicare beneficiaries (Bierman & Clancy, 2000; Cigolle, Langa, Kabeto, & Blaum, 2005; Meng, Friedman, Wamsley, Mukamel, & Eggert, 2005).
MEDICARE RESEARCH GAPS FOR YOUNGER BENEFICIARIES WITH WORK DISABILITY
In the late 1980s, DeJong, Batavia and Griss wrote a seminal piece for the Milbank Quarterly titled "America's Neglected Health Minority: Working-age Persons with Disabilities" that detailed the size and composition of the working-age population, and their unique health, vocational and long-term service needs (DeJong, Batavia, & Griss, 1989). Throughout the paper, there is a palpable frustration with the quantity and quality of research information available. The authors conclude:
So has this major deficit been addressed? Overall, the answer is a qualified yes. The field of health services research has expanded dramatically, with a concomitant growth in the number and quality of peer-reviewed journal outlets. The role of disability in health care access, utilization, health and community integration has been studied regularly, if not intensively. Research funding and academic programs for disability studies have increased, though they lag far behind research and training programs in gerontology (Kennedy, 2002). But despite the economic and political importance of SSDI and Medicare, specific health services research studies of disabled workers in these programs remain surprisingly limited, and much of the information presented here had to be gleaned from the appendices and footnotes of general Medicare analyses. These studies show a complex, diverse and growing population that merits focused health services research and public policy attention.
THE FUTURE OF MEDICARE FOR YOUNGER BENEFICIARIES WITH WORK DISABILITIES
Growth in Medicare enrollment for younger beneficiaries continues to outpace overall program growth (Centers for Medicare and Medicaid Services, 2006a). Between 1995 and 2004, the number of Medicare beneficiaries under age 65 increased by 43%, while the number of elderly rose by only 6% (Cubanski et al., 2005). Barring some unanticipated and dramatic restructuring of SSDI eligibility determination rules, this trend seems likely to continue.
While there is some epidemiological evidence that activity limitation among older Americans is declining, this trend is unlikely to slow the growth in Medicare costs (Chernew, Goldman, Pan, & Shang, 2005). Moreover, this trend of disability decline may slow, or even reverse. There is evidence that disability prevalence is in fact rising among younger Americans (Lakdawalla et al., 2004). The largest increase has occurred for those aged 30-39, whose rate of disability rose by more than 50 % between the 1984 and 1996. The authors suggest that this cohort growth could lead to Medicare expenditures 10-15 % higher than those currently projected (Lakdawalla et al., 2004).
The rise or fall of chronic illness and disability is not inevitable, and neither is their impact on workforce participation, health status and service utilization. Policies and programs can facilitate prevention and early intervention for chronic illness, and minimize the social, political and economic costs of disablement. The Medicare program has already reduced health and economic disparities between working age adults and seniors, but could and should do more to reduce disparities in at-risk populations like working age adults with disabilities, persons with lower socioeconomic status, and racial and ethnic minorities (Eichner & Vladeck, 2005).
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IULIA BALBACH TULEU
Washington State University
a path through a series of help-seeking sieves, with selection occurring at each of several points, based on both the impairments of the applicants and their attitudes, knowledge, persistence, financial need, access to sophisticated medical and legal assistance, and the somewhat variable application of eligibility criteria (p. 76).
Although participants in this study have a variety of disabilities, they have much in common: chaos and uncertainty rule their lives. Only two participants are currently working; the others have had to leave employment behind indefinitely because of physical or mental limitations. Uncertain as to how they will feel day-to-day, regular employment is currently not an option. For most, money is running out and they are barely able to make ends meet on their SSDI payments alone. The majority are without any kind of health insurance, yet require regular supervision and care from doctors and typically take several different prescription medications. Paying for food and rent is difficult. Paying for critical medications, doctor's visits, and rehabilitation therapy--and, in a few cases, completing a round of chemo or radiation therapy --is often out of the question. Several have accumulated mounting debt from health expenditures that they are unable to pay (p. 5).
The issues presented in this article point to a major deficit in both health and disability policy, namely the lack of a heath services research capacity that considers working-age disabled persons as consumers of health care services (p. 346).
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