The authors studied Kansas Medicaid enrollees with serious mental illness and their experiences with integrated managed care and unmet needs.
Objectives: To inform state Medicaid programs and managed care organizations, as well as to build their capacity to serve enrollees with complex needs related to serious mental illness (SMI).
Study Design: Quantitative and qualitative analyses of survey results from a sample of Medicaid enrollees with SMI in Kansas in 2016 and 2017 (N = 189).
Methods: Surveys were conducted by telephone or in person at community mental health centers. Analyses of descriptive statistics from closed-item responses and coded transcripts were used to identify major themes in open-item responses.
Results: Respondents reported high rates of comorbid physical and mental health conditions and current or past tobacco use. Most were unemployed, and some were homeless or living in unstable conditions. Participants indicated a need for better information and communication; improved access to prescriptions, dental care, reliable transportation, medical supplies, and equipment; and a wider physician/provider network. They wanted care coordinators to provide more frequent and responsive contact, better information about benefits and resources, and help navigating the system.
Conclusions: Individuals with chronic and complex conditions can be challenging for managed care organizations to support, especially Medicaid enrollees with SMI, who experience high rates of comorbid physical health conditions and complex healthcare needs. To the extent that managed care organizations can help this population navigate their coverage and use more of the available benefits, barriers to care and unmet needs can be reduced or eliminated and outcomes subsequently improved.
Am J Manag Care. 2019;25(9):450-456Takeaway Points
Managed care organizations can better serve Medicaid enrollees with serious mental illness by helping them use more of the available benefits and removing identified barriers to care. This study adds to the knowledge base about actions that managed care organizations can undertake to improve care for this population, including:
Affordable Care Act reforms and Medicaid expansion have increased insurance coverage and access to care for individuals with serious mental illness (SMI), but the most effective way to implement reforms to meet individual needs for this population is still unclear.1-3 Currently, 38 states and the District of Columbia contract with comprehensive managed care organizations (MCOs) to coordinate and integrate healthcare coverage for at least some of their Medicaid enrollees, and this number is likely to grow.4 The premise underlying this use of managed care is that coordination will improve enrollees’ care experiences and lower program costs by reducing rates of crisis and acute care, decreasing duplication of services, and improving medication management.1,5-7 Individuals with chronic and complex conditions can be the most challenging for MCOs to support, especially Medicaid enrollees with serious mental illness (SMI), who experience higher-than-average rates of chronic medical illnesses and disability and have complex healthcare needs.8 Given this population’s significant healthcare requirements, historically poorer outcomes, greater unmet needs, and potential for increased enrollment via Medicaid expansion, their experiences are of interest to MCOs.
Little information exists on the outcomes of individuals with SMI in Medicaid managed care. Although each state Medicaid program is unique, state-specific studies provide helpful insights into the managed care experiences of Medicaid enrollees with chronic and complex needs. For example, a 2013 survey of Medicaid enrollees with disabilities—administered within 8 months of the Kansas Medicaid transition to managed care—found that 46% of respondents experienced at least 1 problem accessing care or services after implementation.9 Problem areas included limitations in covered benefits, small provider networks, lack of effective communication with MCOs, difficulties with care coordination, and issues with nonemergency medical transportation. Similarly, a 2013-2014 study found that Illinois Medicaid enrollees with SMI fared worse than enrollees with other disabilities and had more unmet needs under both Medicaid fee-for-service and managed care models.10
Since 2013, Kansas Medicaid (KanCare) has been administered by 3 for-profit MCOs, which are paid on a capitated basis. Prior to this time, behavioral health services were provided through a capitated managed care arrangement, whereas physical health services were covered on a fee-for-service basis. Approximately 26,600 adults with SMI were enrolled in KanCare as of 2012, the great majority of whom receive services through 1 of 26 community mental health centers (CMHCs) in the state.11,12 Kansas is among the states with the longest experience with integrated managed care for physical and mental health and thus is an important benchmark for other states moving to integrate mental health benefits through MCOs. As the healthcare and Medicaid landscapes continue to evolve, it is important that policies and practices incorporate beneficiaries’ perspectives in order to identify and address barriers to care.13 This study extends knowledge about integrated managed care experiences of enrollees with SMI and barriers to care.
This study used primary data collected via survey from KanCare enrollees with SMI and was approved by the University of Kansas Institutional Review Board.
The sample consisted of adult Medicaid enrollees who received services and support from 6 CMHCs in Kansas. These CMHCs serve urban, suburban, and rural parts of the state and recruited participants via flyers, newsletter articles, and mailings that included a toll-free number to take a phone survey and dates when they could complete the survey in person at their local CMHC. Survey administrators read a study information document to all participants and obtained verbal consent.
Survey respondents (N = 189) ranged in age from 18 to 83 years (with 36% in the largest age group, 50-59 years) and were primarily women (68%) and white (60%), with less than 10% identifying themselves as Hispanic. Stakeholder checks with CMHC staff confirmed that sample demographics were typical of the SMI Medicaid population that they serve.14
Survey Instrument and Administration
The authors developed the survey in consultation with the Health Care Foundation of Greater Kansas City (now Health Forward Foundation) and the participating CMHC directors.15 The survey consisted of demographic items and closed- and open-ended questions about respondents’ satisfaction and experiences with KanCare, possible areas of unmet need, and suggestions for improvement.15 Questions from existing federal and state surveys were included to facilitate comparisons with the Kansas population. The authors administered surveys between October 2016 and February 2017.
Descriptive statistics were calculated using SPSS software (IBM Corp; Armonk, New York). Responses to open-ended questions were entered into NVivo software (QSR International; Melbourne, Australia) and analyzed through an iterative process. All authors independently read the open-ended responses and discussed them holistically before 1 author conducted initial inductive coding.14 All authors participated in refining codes and themes through reflection, repeatedly revisiting the data, and group discussion until achieving consensus.16 Quotes were then selected to represent themes and illustrate findings.
Table 1 [part A and part B] summarizes respondents’ demographic, insurance, and health characteristics. The most common level of education was a high school diploma or General Educational Development certificate. Just 13.8% of respondents reported being employed for pay, and slightly more than half were dually eligible for Medicare and Medicaid. Just 11% owned a home; 63% rented a home, apartment, or room; and the remaining 27% lived with family members without paying rent, lived in a group home or shelter, or were homeless.
By design, all respondents had an SMI diagnosis. More than half (52%) reported having multiple mental health conditions. Approximately one-third (31%) indicated that their primary condition was schizophrenia; 23%, bipolar disorder; and 17%, depression. On average, respondents reported having 15 days of poor mental health during the last 30 days, compared with 3 days for Kansans in general.17 More than one-third reported having more than 15 days of poor mental health during the prior month.
Compared with 15% of the Kansas general population, 53% of respondents reported being in fair or poor health.17 In addition, 73% of respondents reported having at least 1 chronic physical health condition. Approximately 1 in 5 respondents reported not having a physical exam in the prior 12 months. Finally, 55% were current users of tobacco compared with 18% of the general population, and an additional 15% were former users.17 These findings underscore the significant needs and importance of access to care among Medicaid beneficiaries with SMI.
Kansas requires its Medicaid managed care contractors to provide enrollees with “a person or entity formally designated as primarily responsible for coordinating healthcare services” and “monitoring Members with ongoing medical or behavioral health conditions,” commonly referred to as a care coordinator.18 Despite this requirement, a majority of respondents (75%) reported that they did not have an assigned MCO staff person who coordinated their plan and services, and another 7% were unsure whether one was assigned to them. Many respondents expressed confusion regarding the role of a care coordinator. Those who recognized having a coordinator (19%) reported considerable variability in frequency of contact and perceived helpfulness. Although MCOs may intentionally vary intensity of contact, many respondents felt that the frequency was insufficient.
Open-ended responses to questions about what the care coordinator did and could have done better to help them get the services/supports they needed offer insight into the range of experiences. Many reported that the coordinator helped with appointments, medications, transportation, and equipment or provided encouragement to maintain healthy behaviors. At the same time, 29% of respondents who had experience with a coordinator reported problems, including staff turnover, lack of or discontinued contact, and unreturned calls. Table 2 contains quotes from respondents describing the value and challenges of these experiences. Respondents wanted a consistent care coordinator who was knowledgeable about their needs, could suggest beneficial services and supports, and would contact them consistently. When asked what the coordinator could do better, respondents suggested offering more frequent contact, providing more information on benefits/resources, and returning calls/being easier to contact.
Unmet Needs and Barriers to Care
Respondents identified various unmet needs and barriers to care that have implications for integrating care and meeting complex needs. Following are thematic findings related to information and communication, transportation, medical supplies/equipment, and physician visits/provider networks. Quotes that illustrate these themes are in Table 3. Respondents also cited limited access to prescription drugs and dental care as potentially disruptive to their health. These topics have been addressed in other publications.15,19
Information and communication. Many respondents indicated they were unable to fully understand their coverage and needed better help understanding it. For some, KanCare was their first experience with an insurance company. They reported extreme confusion about what services were covered and which providers were in network—along with frustration at not being able to obtain such information in a timely and accessible manner. Several pointed out that the information booklet was overwhelming or unreadable to them and was not updated often enough. Many respondents reported that when searching for accurate and up-to-date information, they had difficulty reaching someone by phone, received inconsistent or inaccurate information, or were directed to the website for answers. This last concern was especially problematic for those without internet access. Just 19% of respondents reported looking up information about their plan in written material or online, and of those who did, 50% had a problem finding or understanding the information. In contrast, nearly half (47%) had called their MCO customer service in the last 12 months, and a majority (55%) of them reported difficulty getting the help they needed.
Difficulty accessing coverage information created a significant barrier to navigating the healthcare system and accessing needed services. Respondents tended to be unaware of covered services, could not identify how to access needed services, or experienced large bills or denial of claims or recommended treatments without fully understanding why. These negative experiences often discouraged them from pursuing needed health services. Perhaps related to this area, respondents also frequently cited a need for improved customer service.
Transportation. Nonemergency medical transportation (NEMT) is a federally required benefit for Medicaid beneficiaries that is often essential to their ability to access needed services. In this sample, many individuals did not have a car, could not drive due to medication adverse effects, or could not use public transportation due to anxiety, memory loss, lack of availability, or costs. Although several (8%) identified NEMT as a KanCare service that they liked most or found most beneficial, many respondents were not aware that transportation was available to them and noted lack of transportation as a barrier to getting needed medical care. Thirty-nine percent of respondents used NEMT provided by one of the MCOs. Among these respondents, just 36% reported no problems, and many others indicated such problems as transportation that did not show up or was canceled, late rides, and long wait times before or after appointments related to transportation scheduling. In addition, MCOs required enrollees to book their transportation 3 days in advance, which was often impossible for those with an urgent need or an appointment rescheduled by the provider. This requirement was especially challenging for those who had unstable living arrangements who may not have known where they would be staying in 3 days in order to provide the pickup location. Policies that restrict how many individuals can accompany someone using NEMT were also problematic and posed a barrier, particularly for those with caregiving responsibilities for minors, who reported that they could not afford childcare and must take their children with them. Overall, respondents reported frequent missed appointments due to these problems.
Medical supplies/equipment. More than three-fourths (76%) of respondents reported needing some sort of medical equipment or supplies for conditions other than SMI. Of these, 27% were unable to access supplies or equipment. Common equipment needs were continuous positive airway pressure (CPAP) machines for sleep apnea, orthopedic devices (eg, crutches, walkers, canes, braces, scooters), diabetic supplies (eg, testing strips, glucose meters, shoes), and portable oxygen concentrators. Sleep apnea is a serious medical condition that can lead to other health complications if not properly treated. Difficulty monitoring glucose levels can result in serious complications for those with diabetes. Portable oxygen and mobility devices allow individuals to walk for exercise and potentially improve health.
Physician visits/provider networks. An encouraging 82% of respondents reported visiting a primary care physician for a preventive care checkup in the prior 12 months. Among those who had not, the most frequently cited reason was a limited provider network/difficulty finding a primary care physician who accepted KanCare. More broadly, 24% of respondents reported that they were unable to see specialty providers—again, mainly due to difficulty finding one who accepted KanCare, with the most frequently reported provider types being mental health providers, pain specialists, orthopedic surgeons, and podiatrists.
Study findings indicate that KanCare and its MCOs are critical to supporting the health and well-being of Kansas Medicaid enrollees with SMI. Respondents generally appreciated the coverage and security of knowing that they had financial protection against catastrophic medical costs. At the same time, they reported numerous ways that KanCare coverage could be improved to better meet their physical and mental health care needs. Interestingly, most problems identified in the current study are similar to those reported by KanCare enrollees with other disabilities early in the program implementation via the same MCOs.9 Because the MCOs are paid on a capitated basis, they may lack incentives to implement improvements that are likely to increase their current costs.20 However, in many instances, gaps in coverage seem to be shortsighted. For example, coverage for CPAP devices for sleep apnea could offset spending on obesity-related problems and heart disease over time. Similarly, alleviating transportation barriers may result in more continuity of care—or less disruption of care, which has been known to lead to longer-term health problems for enrollees. States should consider a variety of contract and rate-setting strategies to support and promote program improvements, especially for nonmedical services.21
Care coordination has the potential to support better access to care and improved outcomes for enrollees with complex conditions. Indeed, many of the study respondents who worked with a care coordinator reported positive experiences. To the extent that care coordinators can assist enrollees in navigating their coverage, expanded use of services and supports could alleviate some barriers to care and unmet needs. Additional research into the cost-effectiveness of nonmedical interventions for at-risk populations is needed to promote expanded use of care coordinators and other forms of support.22 The particular challenges of this population, such as numerous comorbidities and difficulty processing and understanding information, make individualized support by a qualified professional especially important in accessing appropriate care and other necessary services. Because KanCare does not provide Medicare services for dually eligible enrollees, care coordinators may sometimes be limited in their ability to successfully coordinate services for this segment of the population.
Consistent with other research, our findings demonstrate the valued connections and significance of the relationships between enrollees and care coordinators.23 However, some respondents who encountered a change in care coordinators reported differences in their experiences with each. More research is needed to better understand the skills and interpersonal dynamics that influence these relationships and, consequently, health outcomes.
Respondents reported great difficulty in obtaining accurate and timely information about their coverage. They identified lack of internet access, difficulty with the printed materials, and inability to reach a person on the phone as some of the specific barriers to accessing coverage information. Respondents were more likely to call customer service for information than to look to written materials or the internet. Regardless of the source, a majority of those who sought information or assistance experienced problems getting what they were looking for. Future research should determine whether Medicaid enrollees and/or individuals with SMI have different information or customer service needs than other managed care populations.
Difficulties identifying in-network providers and inadequate provider networks were reported as barriers to care across all 3 MCOs. Addressing these problems will be essential to making coverage more responsive to the needs of not only Kansans with SMI but also all Kansans enrolled in Medicaid now and in the future. As noted by CMS, inaccuracies in provider network information “can create barriers for members to receive services critical for their health and well-being.”24
To access healthcare services, reliable and efficient transportation is crucial for Medicaid enrollees with SMI. Missed appointments and delayed care are known consequences of transportation barriers.25 Although some respondents used NEMT, others were not aware that it was available. Those who did use NEMT often reported it to be unreliable and inefficient (eg, long wait times before or after appointments due to imposed transportation schedules, advance-scheduling requirements). These types of MCO-imposed restrictions cause unnecessary impediments to the practical use of NEMT. A number of existing alternative models for providing NEMT have the potential to address respondents’ concerns.26-28 MCOs should monitor the effectiveness of their services and routinely assess the unintended consequences of restrictive NEMT policies.
Two limitations to the generalizability of these findings are evident. First, the sample was drawn from 6 CMHCs in a single state. However, this state was an early adopter of integrated physical and mental healthcare through MCOs and thus provides important insights for other states as they begin to do so. Second, respondents self-selected into the study, and the sample size was relatively small. Nevertheless, the CMHCs indicated that the sample was generally representative of the study population, and saturation was achieved with open-ended responses. Use of a survey also introduces the possibility of recall bias. Participant responses in this study, however, were similar to those in an earlier study of KanCare,9 including reports of care coordination experiences. Future studies might compare administrative data with self-reports to assess the frequency and nature of care coordination contacts.
Consumer-provided insights gained from Kansas—an early adopter of integrated managed care for physical and behavioral health—can inform state Medicaid programs that are contemplating or in the early stages of Medicaid managed care implementation by highlighting key issues that may require monitoring and oversight. Further, these findings can benefit MCOs as they build their capacity to better serve enrollees with complex needs. Individuals with SMI can be one of the most challenging populations for MCOs to support.1 When the barriers to care and unmet needs identified by respondents in this study are reduced or eliminated, more Medicaid managed care enrollees with SMI may echo the study respondent who said, “Sometimes it all becomes too overwhelming for me with my PTSD and this guy [care coordinator] helped a lot.”Author Affiliations: University of Kansas (JPH, TAL, NKK), Lawrence, KS.
Source of Funding: This study was funded by Health Care Foundation of Greater Kansas City (now Health Forward Foundation) (contract #FY16-4766).
Author Disclosures: The authors report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.
Authorship Information: Concept and design (JPH, TAL, NKK); acquisition of data (JPH, TAL, NKK); analysis and interpretation of data (JPH, TAL, NKK); drafting of the manuscript (JPH, NKK); critical revision of the manuscript for important intellectual content (JPH, TAL, NKK); statistical analysis (JPH, TAL, NKK); provision of patients or study materials (NKK); obtaining funding (JPH, TAL, NKK); and supervision (JPH).
Address Correspondence to: Jean P. Hall, PhD, University of Kansas Institute for Health & Disability Policy Studies, 1000 Sunnyside Ave, Room 1052, Lawrence, KS 66045-7561. Email: firstname.lastname@example.org.REFERENCES
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