Expanding Access to Health Care for Social Security Disability Insurance Beneficiaries: Early Findings from the Accelerated Benefits Demonstration

Introduction

Most Social Security Disability Insurance (DI) beneficiaries must complete a 5-month waiting period to qualify for cash benefits and an additional 24-month waiting period to qualify for Medicare. The 5-month waiting period begins with the first full calendar month after the onset of a disability.¹ Some beneficiaries within either of the waiting periods may lose employer-provided health insurance coverage because their disability prevents them from working. Those who lose employer-provided health insurance may find it difficult to afford health insurance available through provisions of the Consolidated Omnibus Budget Reconciliation Act, commonly referred to as COBRA coverage.² Other beneficiaries may not have had health insurance before disability onset and may find it difficult to obtain affordable health insurance coverage because of a preexisting condition. As a result, DI beneficiaries may not have access to the health care they need to address their disabling condition during the waiting period.

The popular press has used stories about a handful of beneficiaries to conclude that many beneficiaries within the 24-month Medicare waiting period do not have health insurance and that many may go without the health care needed to address their disabling condition. For example, one recent article uses the case of one beneficiary to infer a much larger problem, stating that many DI beneficiaries "have spent their savings on the care necessary to reach a diagnosis and now cannot get private insurance" (Saker 2010). Disability advocacy groups have stated that removing the Medicare waiting period may have the long-term benefit of increasing employment among beneficiaries. For example, the Consortium for Citizens with Disabilities has recommended eliminating the Medicare waiting period in order to help beneficiaries obtain the care required to stabilize their health condition and facilitate a transition to employment (CCD 2008). Yet policymakers lack the data to quantify the extent of the problem and the potential benefits of eliminating the Medicare waiting period.

Congress recognized the importance of health insurance coverage for individuals with disabilities in the "purpose and findings" section of the Ticket to Work and Work Incentives Improvement Act of 1999. Although the legislation did not alter the Medicare waiting period, it did authorize the Social Security Administration (SSA) to conduct a demonstration project designed to produce credible data on the costs and benefits of altering the 24-month Medicare waiting period. In 2005, SSA awarded a contract to MDRC, a nonprofit social policy research organization, to conduct the demonstration project. The project is called the Accelerated Benefits (AB) demonstration because it provides beneficiaries with a health benefits package before the completion of the Medicare waiting period.

This article describes the AB demonstration and the early findings from the project. The first section describes the core AB plan and the additional services available to some project participants. The second section describes the process used to identify, recruit, and enroll beneficiaries for the project, and presents findings from the enrollment process. The third section describes findings from the 6-month follow-up survey on AB service use and unmet medical needs. The fourth section presents data on AB health benefit expenditures and the characteristics of beneficiaries who reached the $100,000 health benefit limit. A discussion of the findings to date and future research plans concludes the article.

Project Design

The AB demonstration project was designed to determine whether providing a health benefits package and additional services during the 24-month Medicare waiting period would improve the health status of DI beneficiaries, increase the chances that they return to work, and reduce their reliance on DI cash benefits. We designed the project in collaboration with MDRC and their subcontractors.³ Key design features are described below.

Study Population and Study Sample

The study population for the AB demonstration project was DI beneficiaries who (1) were aged 18 to 54, (2) did not have health insurance coverage, (3) did not have a representative payee, and (4) were within the first 6 months of DI entitlement. Several studies indicated that this population group was likely to benefit from the AB plan and services. We selected a younger group because research has shown that younger recipients are more likely to return to work.⁴ We selected those without health insurance coverage because research has shown that they are more likely to have unmet medical needs, and thus could benefit from the AB plan.⁵ Excluding DI beneficiaries with health insurance also excluded beneficiaries who concurrently receive Supplemental Security Income (SSI) payments, because most SSI recipients receive Medicaid coverage. We selected those who did not have a representative payee because we wanted to obtain informed consent from the DI beneficiary. Finally, we selected those within the first 6 months of DI entitlement because we wanted to provide the AB package for a substantive period before the 24-month waiting period ended and Medicare began. Based on our assessment of prior research and on discussion with MDRC and MDRC's technical advisory group, we concluded that if the AB project does not have a substantive impact on our study population, then the AB program is unlikely to have a substantive impact for the broader population of DI beneficiaries.⁶

Our subcontractor, Mathematica Policy Research Inc. (MPR), selected a sample from the study population to test the impact of providing access to health benefits, either alone or in conjunction with additional services, to DI beneficiaries. MPR randomly assigned sample members into three groups: AB, AB Plus, and a control group. Participants in the AB and AB Plus groups had access to a health benefits package described below. In addition to health benefits, AB Plus members also received services designed to help them manage their health care, prepare for a return to work, and understand how employment might affect their benefits. We use the term "treatment group" to refer to the combined AB and AB Plus groups. The control group members did not receive access to health benefits, but they were not prohibited from obtaining health insurance through other means.

Health Benefits Package

The AB health plan covered a range of services designed to meet both general and specific health care needs of DI beneficiaries. The plan included basic hospital, medical, and drug benefits along with some nontraditional benefits including use of skilled nursing facilities, home health care, hospice care, prosthetics, dental care, nutritional counseling, and out-of-network services under certain circumstances.

No premiums were charged to individuals enrolled in the AB health plan. Participants were responsible for a $12 copayment for most services; exceptions were ambulatory and emergency room services ($35) and inpatient care ($200). Although the plan covered 100 percent of most services, participants were subject to a maximum health care benefit of $100,000. Limits were also placed on inpatient treatment for mental disorders, chemical abuse treatment, skilled nursing facility use, rehabilitation facility care, and home health care services. Certain procedures, services, and supplies required precertification or a utilization review to ensure that they were medically necessary.⁷

In addition to standard medical services, the AB health plan offered coverage for vision, hearing, and dental services. For vision care, the plan covered up to $200 for refraction, lenses, frames, and contact lenses. Hearing test and hearing aid costs were fully covered up to a $1,000 maximum benefit. The AB dental plan covered 100 percent of preventive/diagnostic (routine) services, 75 percent of basic services, and 50 percent of major services. Dental coverage was limited to a maximum benefit of $1,000.

The plan covered most prescription drugs after copayments of $5 for generic drugs, $15 for preferred brand name drugs, and $30 for nonpreferred brand name drugs.

AB Plus Services

AB Plus members received additional services that were not available to the AB and control group members. The first of these services was medical care management (MCM) provided by CareGuide, a health care management company. Each participant received a primary care manager, either a coach or a nurse, as determined by a preliminary assessment.⁸ Coaches provided beneficiaries with information on specific disorders, behavioral coaching, and assistance with obtaining health care. Nurses assessed clinical needs and assisted with navigating the health care system. These primary care managers monitored health care needs and adherence to treatment protocols, and helped coordinate health care for the participant.

Once participants achieved sufficient medical stabilization, they could begin the Progressive Goal Attainment Program (PGAP). PGAP is designed "to reduce psychosocial barriers to rehabilitation progress, promote re-integration into life-role activities, increase quality of life, and facilitate return-to-work" (University Centre 2010). MDRC recommended PGAP based on evidence that suggested it could be effective in improving functioning and could increase the likelihood of a return to work for individuals with a disability (Sullivan and others 2005). Because SSA disability determinations require DI claimants to be incapable of performing substantial gainful work, beneficiaries may have the false perception that they are unable to engage in activities that may lead to an eventual return to work. We thought PGAP could help beneficiaries overcome this perception. AB Plus participants were sent a PGAP video and workbook, and CareGuide coaches worked with AB Plus participants by telephone to help them complete PGAP.

AB Plus staff referred participants who showed interest in learning more about employment, and how it may affect their benefits, to employment and benefits counseling (EBC). EBC included discussion about the participant's work history, credentials, career goals, and employment expectations. Counselors also notified participants of local support services and helped prepare them for a return to work. Participants were given information on how employment could affect their benefits, reporting requirements, and work incentives. Transcen, Inc. provided EBC service by telephone.

Hypotheses

We hypothesize that the AB package will initially increase access to health care and reduce unmet health care needs among our study population (Chart 1). We also expect to see an increase in preventive care and quality of care overall. These direct outcomes should lead to improved functioning and health status, which may result in a return to work for some participants. The expected long-term outcomes include a reduction in DI benefits resulting from an increase in long-term employment and a reduction in future expenditures of public health insurance programs, such as Medicare and Medicaid, resulting from increased preventive care.

The AB Plus services provide additional supports to participants through three components as shown in Chart 1. MCM service helps participants adhere to the proper course of treatment. This can reduce the incidence of secondary health conditions that arise from deviations from a medical treatment regime, lead to additional improvements in overall health and functioning, increase chances of employment, and reduce reliance on public benefits. We hypothesize that PGAP will help beneficiaries change their attitudes toward their disabling condition and increase their motivation. Participants with higher motivation and a positive attitude may be more likely to seek work support programs and employment. EBC services will provide additional employment-related services, which should lead to higher reemployment and reduced reliance on public benefits.

AB Demonstration Not Designed to Estimate Induced Entry

The AB demonstration project will not produce an estimate of induced entry into the DI program. Induced entry may occur when DI changes involve new benefits or services that induce some individuals with disabilities to enter the program. Induced entry effects are difficult to estimate and, for DI, small increases in induced entry can translate into substantial program costs. Because the costs would increase significantly if we designed the demonstration to estimate induced entry effects and the complexity of such a design would have introduced substantial risks, we decided against developing a project with that capability.⁹

Recruitment Process

The AB demonstration recruitment goal was to enroll 2,000 uninsured DI beneficiaries. Our original intent was to assign 20 percent to the AB group, 40 percent to the AB Plus group, and 40 percent to the control group. As discussed later, however, health care costs necessitated a revised allocation. Ultimately, AB enrolled 2,005 participants: 616 (31 percent) in the AB Plus group, 401 (20 percent) in the AB group, and 988 (49 percent) in the control group. One AB Plus participant dropped out of the study, bringing the final total to 615.

We used SSA administrative records to identify newly entitled beneficiaries aged 18–54 who had to wait at least 18 months for Medicare entitlement and who were their own payees. Restricting the pool to beneficiaries who had at least 18 months left in the waiting period excluded a large number of beneficiaries who received an award notification letter after this period. Thus, we excluded beneficiaries who received benefits based on an appeal of their initial disability determination. We sent a monthly administrative data file to MPR, the subcontractor responsible for recruiting. Each file contained a new set of beneficiaries meeting our selection criteria. MPR sent a letter with information about the demonstration to a sample of beneficiaries identified in the file. A few days after sending the letter, MPR phoned those who agreed to participate to determine whether they had health insurance and were cognitively able to provide informed consent. Respondents who reported that they did not have health insurance at the time of the interview, and who could provide informed consent, completed a baseline survey that elicited information about their overall health status, use of medical services, employment history, attitudes toward work, household and demographic characteristics, and income; and whether they sought employment support services.¹⁰ Immediately upon finishing the survey, the MPR interviewer used a computerized random assignment algorithm to identify whether the participant was assigned to the AB Plus group, the AB group, or the control group. The MPR interviewer informed participants randomized into the AB or AB Plus groups of their assignment during their phone interview. MPR informed participants assigned to the control group by mail.

We used a two-phase recruitment strategy. The first phase was a demonstration pilot to guide the implementation of the larger second phase. The enrollment rates for both phases were exceptionally high, with 100 percent of the eligible Phase 1 beneficiaries and 99 percent of the eligible Phase 2 beneficiaries agreeing to participate.

Phase 1 began in October 2007 in four metropolitan areas—Houston, Minneapolis, New York City, and Phoenix. We sent MPR two administrative data files, one drawn at the end of September 2007 and one drawn at the end of October 2007. MPR sent letters to 1,503 beneficiaries in the 4 sites and 358 of the beneficiaries completed the health insurance questionnaire. Of those who completed the questionnaire, 70 candidates (19.6 percent) did not have health insurance. MPR limited Phase 1 enrollment to 66 beneficiaries and did not contact 4 of the candidates. All of the remaining 66 beneficiaries agreed to participate and completed the baseline survey. Phase 1 enrollment ended in November 2007.

The first phase provided lessons to help recruitment in the second phase of the demonstration. Given the larger enrollment target of 1,934 participants in Phase 2, site selection required particular consideration of managing project costs.¹¹ We determined that major metropolitan areas with high concentrations of DI beneficiaries would be the best locations and selected the largest 53 metropolitan areas.¹² Chart 2 is a map showing the Phase 2 sites. We discontinued enrollment in (and dropped from the demonstration) Buffalo, because high rates of insured beneficiaries resulted in low enrollment; and Boston, because a change in state law mandated universal health insurance.

Phase 2 recruitment began in March 2008. We used the same recruitment procedures as in Phase 1, with only minor changes to the baseline survey. We sent monthly administrative record files to MPR beginning in February 2008 and continuing through December 2009. MPR sampled 21,109 of the 25,953 beneficiaries identified by SSA administrative files as meeting the demonstration's eligibility criteria. MPR contacted 17,876 beneficiaries by telephone and of those, 15,796 completed the health insurance question. The screening determined that 1,979 beneficiaries did not have health insurance and were eligible to participate, and MPR randomized 1,939 beneficiaries into the three study groups.

In November 2008, we stopped enrolling beneficiaries in the AB Plus study group. The original enrollment target for AB Plus was 800 participants, but we capped enrollment at 616 to contain costs. Health benefit expenditures for the Phase 1 sample were 50 percent higher than expected, and our estimates indicated that the budget could not support enrollment of 800 AB Plus participants. We determined that we would need to observe larger program benefits to justify the higher health benefit costs, and the final AB Plus sample size was statistically sufficient to identify important effects. To partially compensate for the loss in statistical precision associated with the smaller sample size, we expanded the control group from 800 to 1,000.

When Phase 2 enrollment ended in January 2009, 1,939 beneficiaries were enrolled, with 590 participants in the AB Plus group, 388 in the AB group, and 961 in the control group. One member of the AB Plus group dropped out of the study, lowering the Phase 2 enrollment to 589 participants. Chart 3 summarizes the case flow for both phases of the project.

Prevalence and Type of Health Insurance Coverage

Given that 16,154 screened beneficiaries (358 in Phase 1 plus 15,796 in Phase 2) responded to all of the health insurance questions, and 2,049 (70 in Phase 1 plus 1,979 in Phase 2) were without insurance, the overall rate of those without health insurance was 12.7 percent. This rate varied substantially across the 53 sites, as shown in Chart 4. The highest rates of beneficiaries without health insurance were in Oklahoma City, Louisville, two sites in Florida, New Orleans, and four sites in Texas. The lowest rates were in Buffalo, Minneapolis, Boston, and several sites in California.

The baseline survey that identified whether a beneficiary had health insurance also provided data on the source of coverage for the insured. Among the 14,105 beneficiaries who reported health insurance coverage, 27.8 percent had insurance through an employer, 29.5 percent were covered by a spouse's plan, and 15.6 percent were covered through COBRA (Table 1). Nearly 32 percent of insured beneficiaries had coverage from public sources, with almost 18 percent insured through Medicaid or Medicare.¹³ About 8 percent had coverage through both a private and public plan.

Characteristics of Those with Health Insurance Compared with Those without Coverage

Table 2 compares the age, sex, and impairment characteristics of three groups of beneficiaries identified for the study—the entire set of beneficiaries who were sent a letter about the AB project, the subset who reported having health insurance coverage, and the subset who agreed to participate in the study. Participants are similar to the group with health insurance in terms of age at entitlement and distribution by sex: Nearly 30 percent of each group are younger than 45, about 70 percent are aged 45–55, and a little over 49 percent are women. These groups are slightly older and have a larger percentage of female beneficiaries than the entire selected sample, where 69 percent were in the older age category and about 48 percent were women. There are differences in the distributions of impairment types between the groups. Participants are more likely than those reporting health insurance coverage to have mental disorders (22.0 percent versus 15.0 percent), diseases of the circulatory system (11.7 percent versus 8.7 percent), diseases of the musculoskeletal system and connective tissue (19.4 percent versus 14.0 percent), and diseases of the nervous system and sensory disorders (16.8 percent versus 14.8 percent). Participants are less likely to have neoplasms (8.2 percent) than beneficiaries who report that they have health insurance (23.8 percent).¹⁴

Characteristics of Project Participants from Baseline Survey

The baseline survey that MPR administered prior to randomization provided a more detailed description of beneficiaries who agreed to participate in the study. Table 3 presents the participants' demographic characteristics and includes information on their income, education, and homeownership status. Table 4 presents self-reported health, functional, and physical limitations in addition to primary diagnosis categories. Table 5 presents the health insurance coverage that participants reported having prior to randomization. Table 6 presents the percentage of reported unmet needs prior to randomization, with medical and prescription drug needs shown separately. All tables include p-values to help identify differences in characteristics across groups that arose by chance and that might be correlated with the AB outcomes specified in Chart 1. MDRC provided evidence that they implemented the assignment process properly and that any differences are due to chance and not to deviations from random assignment.

Most of our study sample had an annual household income below $30,000 (Table 3). Approximately 60 percent of the participants reported less than $30,000 in income; 16.6 percent reported having less than $10,000. Only 14.6 percent reported household income greater than $50,000. The large share of beneficiaries with annual household income of less than $30,000 indicates that many beneficiaries who enter the DI program without health insurance coverage may benefit from the recently passed health care reform, the Affordable Care Act. The law makes health insurance coverage more affordable by providing subsidies for families with income below 400 percent of the federal poverty line to purchase insurance through new health insurance exchanges.¹⁵ Many of the beneficiaries we contacted who did not have health insurance coverage were likely to meet the eligibility standards under the new law.

The data also provide a picture of the demographic characteristics of participants. The majority were between ages 45 and 55. The sample was nearly equally split between men and women. The majority of participants were white (58.3 percent), and 22.0 percent were black. A large portion of the demonstration's participants (45.9 percent) lived in the South, and 42.1 percent owned their own home. The majority (51.6 percent) of participants reported having a high school diploma, but nearly 20 percent had a higher education degree. There are no substantive differences in demographic or economic characteristics between the AB Plus group, the AB group, and the control group.

Not surprisingly, most beneficiaries reported substantial health impairments and functional limitations (Table 4). High percentages of participants reported having mental disorders (22.0 percent) or diseases of the musculoskeletal connective tissue and nervous system (19.4 percent). Table 4 also shows a difference between the three groups for the primary diagnosis of a neoplasm, which was reported by 10.6 percent of the AB Plus group, 8.2 percent of the AB group, and 6.7 percent of the control group. We are somewhat concerned about this difference because of the high incidence of death among beneficiaries with neoplasms during the 24-month waiting period, and accounting for this difference when analyzing mortality outcomes may be important. Over 94 percent of the randomized participants possess some form of disability that hinders their daily activities. Large shares of participants reported having difficulty standing for long periods (83.8 percent), climbing a flight of stairs (78.3 percent), or lifting or carrying a 10-pound package (62.7 percent). Participants also reported having difficulty preparing meals (36.6 percent), using public transportation (36.4 percent), taking medication (34.4 percent), and riding as a passenger in a car (21.1 percent). Over 80 percent reported some form of personal or emotional problems that hindered their daily activities in the 4 weeks preceding randomization. When the participants were asked the severity of their conditions, 34.9 percent reported they had "a lot" and 25.0 percent said they had "some" personal or emotional problems affecting their daily activities. A substantial share of participants (14.2 percent) reported they could not do daily activities.

Table 5 shows the health insurance history of participants. Less than 4 percent reported that they had never had health insurance prior to enrollment. Of the participants who reported having had health insurance, 85.3 percent reported having private insurance. Eight percent of participants who had health insurance coverage reported that they had public coverage either through Medicare or Medicaid.¹⁶ Over 62 percent of the participants reported having health insurance within the last year, with 36.1 percent reporting they had health insurance in the 6 months leading up to the baseline survey.

A majority of participants reported unmet health care needs prior to randomization into the project. Table 6 shows that 70.2 percent of participants reported some form of unmet medical needs and 69.9 percent reported some type of unmet prescription need. It also shows that 57.7 percent reported having postponed getting medical care and 47.0 percent reported they did not get medical care they needed. When the category was combined, 64.7 percent reported they either did not get or postponed medical care they needed. Of the participants reporting unmet prescription needs, 53.9 percent reported that they used prescriptions less than prescribed, 53.7 percent reported they did not fill prescriptions when first prescribed, 51.5 percent reported they did not refill their prescriptions, and 47.8 percent did not fill entire prescriptions. There are no substantive differences in unmet medical needs between the three participant groups.

Six-Month Follow-up Survey

MPR conducted a 6-month follow-up survey to gather timely information about the design and implementation of the intervention and to assess early impacts on health care utilization and unmet health care needs. To determine if the plan needed any modifications, we assessed participant satisfaction with plan design and implementation. The survey consisted of topic modules, with pertinent program topics comprising medical service use, unmet medical needs, health insurance coverage, and satisfaction with AB services. We planned to survey 600 participants (240 control, 120 AB, 240 AB Plus).¹⁷ MPR conducted the surveys using computer-assisted telephone interviewing (CATI). Survey operations began in October 2008 and were completed in January 2009. A total of 483 surveys (80.5 percent) were completed, covering 194 control group, 96 AB, and 193 AB Plus participants. MPR reported that nonrespondents included 5 refusals, 14 who were deceased, and 98 who were alive according to administrative records but could not be contacted.

Use of Benefits by Program Participants

Most of the participants who received the health benefits package through the project used at least one of the services that were available (86.5 percent of the AB Plus group and 87.3 percent of the AB group), as shown in Table 7. The survey also captured user satisfaction rates. We intended to use this information to make any necessary adjustments to the provision of services. However, satisfaction rates with the services provided were very high (mostly above 90 percent) with little variation between AB and AB Plus users.¹⁸ We view these results as indicating that our contractor and subcontractors delivered the AB and AB Plus services as we intended.

The most commonly used service for participants in both groups was the prescription drug benefit, followed by primary care and specialty care. It is somewhat surprising that the service-use rates of the program groups are very similar. During the design phase, our technical advisory group and contractor indicated that the MCM model would increase use of available health benefits. We thought this would be particularly true in our study because participants did not have health insurance and perhaps had limited recent experience in dealing with health care providers. The similarity in health benefits use among the groups may be due to a common unsatisfied demand for services resulting from the lack of health insurance. In addition, within 6 months of enrollment, only 20.7 percent of the participants had used the MCM services.

The high rate of use of the CareGuide coaches (78.1 percent) shown in Table 7 may reflect the fact that these coaches were part of the AB Plus intake process. The coaches did an initial assessment to determine whether the participant needed referral to the MCM nurses or was ready to begin the PGAP program.

Control Group Members Getting Health Insurance

At the time of random assignment, no participants had health insurance coverage. Table 8 shows the percentage of participants in the treatment group (that is, members of either the AB or AB Plus groups) and in the control group who reported that they were able to obtain some other type of health insurance during the first 6 months. We were somewhat surprised that 24.2 percent of the control group was able to obtain health insurance coverage within 6 months of random assignment; 10.7 percent of control group members, or nearly half (about 44 percent) of control group members who obtained health insurance, were covered through a public source. Apparently, we underestimated the likelihood that DI beneficiaries might become qualified for Medicaid through "spend down" provisions, or covered under other state programs. Table 8 also shows that 15.0 percent of all control group members reported obtaining some type of private health insurance coverage, accounting for about 62 percent of the control group who had health insurance coverage.¹⁹ Although we expected this to be difficult because of their health status, apparently we underestimated the likelihood that participants would purchase coverage from a former employer (through COBRA) or obtain it through a spousal plan. The small percentage (1.5) of treatment group members who picked up additional private insurance reflects the fact that these plans are costly and would likely duplicate the services provided by the AB package.

Use of Medical Services

Participants in the project's treatment group took advantage of the available medical services within the first 6 months of enrollment. The use of health care services shown in Table 9 reflects the fact that the participants had health conditions that needed medical attention. Within 6 months of random assignment, 91.9 percent of the treatment group had seen a doctor, and 90.2 percent reported regular use of prescription drug benefits. Emergency room visits were reported by 36.6 percent of treatment group members, and 23.3 percent had been admitted to the hospital.

Although the reported use of medical services differs between the treatment group and the control group, almost the same share—84.9 percent—of the control group saw a doctor during this period; and while 82.3 percent of the treatment group reported a "regular source of care," 71.7 percent of the control group also responded affirmatively. However, while exactly 60 percent of the treatment group reported three or more visits during this 6-month period, only 41.9 percent of the control group reported that level of care. Thus, although both groups reported they were able to obtain medical care, their responses seem to indicate that health insurance may provide access to a higher level of service, which might result in fewer "unmet needs."

It is frequently reported that uninsured people often use the emergency room for routine health care issues; however, the survey surprisingly showed higher levels of emergency room use in the treatment group (36.6 percent) than in the control group (27.8 percent). The difference in hospital admissions was in the expected direction: Only 15.8 percent of the control group was admitted to a hospital, and 23.3 percent of those with health insurance had been admitted.

Unmet Medical Needs

Participants were asked specific questions about whether they either postponed or went without medical or prescription needs. As Table 10 shows, the frequency of reported unmet medical needs for any reason was substantially lower for the treatment group (45.0 percent) than for the control group (63.8 percent). However, even among those with the AB or AB Plus health plans, a significant percentage reported unmet needs: 51.1 percent reported not filling or refilling a prescription for any reason, 32.2 percent postponed getting medical care, and 19.2 percent did not get medical care. The health plans make a difference, however, as 51.4 percent of the control group did not fill a prescription because of cost, while only 24.8 percent of the treatment group did not fill a prescription because of cost. The difference is smaller for referrals to a doctor for tests or for surgery, and the share of participants in both groups reporting an unmet need is relatively small. In the control group, for example, cost or lack of insurance prevented only 4.0 percent from going to a doctor after being referred, only 7.6 percent did not go for surgery when referred, and only 8.4 percent did not get a test or x-ray after referral.

In summary, two surprising findings from the 6-month survey are that (1) 24.2 percent of the control group were able to obtain health insurance within 6 months of random assignment, and (2) the control group generally received needed medical care, albeit at a somewhat lower rate, despite not having access to the AB package.

Health Benefit Expenditures

The costs of providing accelerated health benefits were higher than we expected. As the project began, we estimated that the costs of providing the AB package would be about $24,000 per person from the time of enrollment to the end of the 24-month Medicare waiting period. We based our estimate on recent studies that used secondary data sources to estimate the costs of the waiting period.²⁰ Our data show that the actual per-person costs exceed $30,000. About 30 percent of the total costs are due to the 9.0 percent of the treatment group members who reached the $100,000 cap that we placed on the AB package.

We examined the characteristics of those who reached the cap to better understand why they reached the maximum. Five diagnostic categories account for 79.3 percent of those reaching the maximum (Table 11). Nearly 24 percent of the participants reaching the maximum have a malignant neoplastic disease, 18.5 percent have cardiovascular conditions, and 13.0 percent have neurological impairments. The mental disorders and musculoskeletal impairment categories each account for an additional 12.0 percent.

We also examined the incidence of reaching the cap for each diagnostic category identified in Table 11. Of all participants with malignant neoplastic disease (cancer), 22.7 percent reached the cap. Participants with a cardiovascular impairment were a close second, with 21.3 percent reaching the maximum.

The speed with which AB beneficiaries reached the maximum benefit indicates additional costs they would have incurred during the rest of the waiting period. On average, these participants reached the limit in just over 12 months. Because this period may vary by health condition, we calculated the average time for each diagnostic category. Chart 5 shows a box and whiskers plot of these data. On average, participants with malignant neoplastic disease reached the maximum sooner than beneficiaries with other primary diagnoses. The median period for reaching the maximum benefit for participants with malignant neoplastic diseases was just 9 months after random assignment into the project. We conclude that without the $100,000 limit, costs might have been substantially higher given the length of time left in the waiting period.

One explanation for the substantial share of participants reaching the maximum is the costliness of end-of-life care. The two most prevalent conditions among beneficiaries who reach the maximum, malignant neoplastic disease and cardiovascular conditions, have relatively high short-term mortality rates. About 45 percent of individuals with malignant neoplastic disease and about 9 percent of those with cardiovascular conditions died during the Medicare waiting period, both exceeding the overall incidence of 7.8 percent. We suspect that the cost estimates we used to budget for the AB project did not properly account for end-of-life care expenses. More conclusive analysis will require information on the full medical costs, which will become available at the end of the project.

Discussion and Conclusions

Congress authorized SSA to conduct a demonstration project to assess the relative benefits and costs of altering the 24-month Medicare waiting period for DI beneficiaries. With this authority, SSA designed and conducted the Accelerated Benefits demonstration. Prior to conducting the study, we examined available information on the Medicare waiting period from news stories, qualitative and quantitative research, and the "purpose and findings" section of the Ticket to Work and Work Incentives Improvement Act.²¹ Based on this information, we expected to find that many beneficiaries would not have health insurance coverage, and would not be able to obtain it, during the waiting period. We expected that the AB package would increase the use of health care services by beneficiaries and reduce their unmet medical needs during the first 6 months of the AB demonstration. We also expected that the majority of beneficiaries who did not have health insurance would have very limited access to health care during the waiting period.

According to the 6-month survey, our contractor and subcontractors delivered the AB services to almost all eligible beneficiaries and the vast majority of beneficiaries were satisfied with them. The data show that within 6 months of AB enrollment, about 87 percent of participants who were eligible for services received them, and over 90 percent of the group receiving services reported satisfaction with them. We are therefore confident that the findings from the AB demonstration are unlikely to be affected by any problems with the administration of services.

Only 12.7 percent of beneficiaries identified for the study did not have health insurance coverage at the time we contacted them, and almost 25 percent of them were able to obtain it by the time we recontacted them 6 months later. We suspect this may stem from our selection of beneficiaries who quickly had a favorable outcome on their initial disability decision; that is, it excluded beneficiaries who did not receive a benefit award until after the 6th month of DI entitlement.²² Individuals with health insurance coverage might have complete medical evidence, making it easier for the disability examiner to decide favorably on their case. If our suspicions are correct, then eliminating the Medicare waiting period may help some beneficiaries but it may not close the gap in their health insurance coverage. The provisions for wider health care access in the recently passed Affordable Care Act might fill the gap more effectively. Indeed, our baseline data on the household income of AB participants indicate that the majority would be eligible for subsidies under the new law.

Our data show that the AB package increased access to medical care and reduced unmet medical needs. Although the effects were substantial in some cases, we expected to see larger differences in these outcomes. Our hypothesis was that, without the AB package, few beneficiaries would report having access to medical care and almost all would report some type of unmet medical need. In fact, we found that some who did not have the AB package were able to obtain health care and had only modest levels of unmet medical needs in the first 6 months of the study. In future research, we hope to examine the ways that beneficiaries without health insurance obtain health care and the resulting economic impact.

The costs of providing accelerated health benefits were higher than we expected. At the onset of the project, we estimated that the costs of providing the AB package would be about $24,000 per person. Our data show that actual costs are over $30,000 per person. About 30 percent of the total costs are due to the 9.0 percent of the sample who reached the $100,000 cap that we placed on the AB package. Most of these expenditures appear to be driven by end-of-life care for those with various types of cancers (neoplasms) or with cardiovascular conditions. Without the $100,000 cap, the costs of providing accelerated health benefits would be substantially higher.

We did not expect to see a substantial change in employment or benefit receipt within the first 6 months of the project, and we did not include questions on preventive care and relative quality of care in the 6-month follow-up survey. We expected that most newly entitled beneficiaries would need time to obtain the health care needed to address their disabling condition, seek rehabilitation services, and adjust to their disabling condition. In future research, we plan to use the 12-month follow-up survey to examine the impact of the AB health plan on preventive care and relative quality of care. We also plan to study the longer-term effect of AB on employment and benefit use. We are particularly interested in potential reductions in post-waiting period Medicare expenditures resulting from the care provided through accelerated health benefits.

This article presents data from the early stages of the project. We will have more project information in 2011 when MDRC completes its final report. However, we will continue to examine the impact of AB on long-term employment and program participation outcomes after the final report is released.