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Dual Eligible Demonstrations: The Beneficiary Perspective

Although interviewees’ experiences differed, certain common themes provide insights that can help inform states and other stakeholders as the demonstrations progress and as other new programs, particularly managed care delivery systems that integrate medical care and long-term services and supports, are implemented.

  • Generally, interviewees tended to enroll in the demonstration based on information or with assistance from trusted sources. These sources included providers, colleagues in the disability community, and service coordinators at a housing complex and a center for independent living. Interviewees put particular trust in their medical and LTSS providers with regard to whether to enroll in the demonstration. Consequently, when providers are not familiar with the demonstration, are not participating in health plan networks, or are wary about program policies, interviewees were less inclined to participate.
  • Interviewees who opted out of the demonstrations often did so because they did not understand what the new program would mean for them or felt that the risk of disrupting established services outweighed any potential benefits. Interviewees reported that they were afraid of change or were simply comfortable their current situation and not want to “rock the boat.” Interviewees who have longstanding relationships with personal care attendants who help them with day-to-day functioning were especially reluctant to change delivery systems if their aides are not participating in the new health plan networks. Word of mouth has a powerful impact on interviewees’ decisions about whether to participate in the demonstrations. Interviewees who heard about gaps in service or other problems that occurred in parts of the state where implementation occurred earlier were not inclined to enroll. For example, in Ohio, which had a two-part enrollment process, several people characterized the transition to Medicaid managed care, which occurred first, as “a bumpy start” and said that, as a result, they were reluctant to enroll in Medicare managed care later.
  • Interviewees’ participation in the demonstrations can be disrupted if they lose eligibility for either Medicare or Medicaid benefits. Both of these programs have complex rules, and Medicaid eligibility must be periodically renewed. An interviewee, who continued to meet the eligibility criteria but temporarily lost Medicaid benefits due to glitches in renewal paperwork, was faced with having to re-enroll in the demonstration once Medicaid eligibility was re-established. Other interviewees were at risk of losing Social Security Disability, and consequently Medicare, benefits as a result of a return to work or medical improvement in disability status and therefore would no longer be eligible for the demonstrations even though they still may have the same underlying chronic conditions or other needs that would benefit from the care coordination offered by the demonstrations.
  • Interviewees universally embrace the concept of better-coordinated care, although initial implementation of this feature of the demonstrations was slow. Those who received care coordination services were very positive about the program. Those who did not, particularly after they requested help, became frustrated and anxious due to the lack of communication with care coordinators because they had complex needs that must be addressed often daily. Interviewees said that health plans seemed overwhelmed by the number of new enrollees. Consequently, interviewees did not always hear from care coordinators immediately or have initial needs assessments, which are used as the basis for planning services, in a timely manner. Similarly, a broader team approach to care planning, which is a prominent feature of each demonstration, had not yet been implemented to any significant extent.
  • Although interviewees generally understood that their benefits had changed at the start of the demonstrations, many were confused about what the change meant for them. The experience of those who did not have smooth transitions to the new programs suggests that better coordination requires improved communication among state agencies and health plans, between different departments within health plans, between former and new providers, among care coordinators if interviewees had more than one, and within care teams. Otherwise, interviewees may have received confusing or conflicting information and assistance.
  • In some instances, health plan provider networks were not as robust as interviewees thought they would be. Interviewees cited several reasons for this, including that some providers, particularly independent caregivers, were not always aware that they would be required to have contracts with and bill health plans; some providers were negotiating but had not yet been certified to participate in health plan networks; and some providers simply were not familiar with the new program or had not been able to get the information they needed to apply to be in plan networks.
  • Beneficiary interviews revealed a need for greater assistance and more information about how to get help with obtaining needed services and answering questions. Although each state established an ombuds office for the demonstration, most interviewees did not know about those services or how to access them. Interviewees were more apt to know the name of their insurance plan than of the new program, and they tend to contact their health plan directly when they have questions. Early on, however, respondents indicated that health plan customer service representatives could not answer their questions or that plan representatives acted more as gatekeepers than assistors. Some interviewees reported that health plan staff did not seem to understand the nature of long-term services and supports, including the need for quick responses to problems that can have an immediate effect on beneficiaries’ safety and ability to function on a daily basis.
Introduction Beneficiary Profiles

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