Many adults with intellectual and/or developmental disabilities (IDD) can access health and long-term services and supports (LTSS) through Medicaid. States are reforming their Medicaid LTSS programs from a fee-for-service model to a Medicaid managed LTSS (MLTSS) approach, anticipating improved quality of care and reduced costs, although there is limited evidence of MLTSS effectiveness. This study's objective was to contribute to the growing MLTSS research literature by describing MLTSS implementation in Kansas for adults with IDD. Thirty-one stakeholders completed in-depth semi-structured interviews, representing state or regional groups, service coordination providers, and family caregivers. Findings identify key aspects of the Centers for Medicare and Medicaid Services' new MLTSS regulations in the design and implementation of MLTSS programs.
In the United States, there has been a shift towards community-based services and supports and the promotion of self-determination for adults with intellectual and developmental disabilities (IDD) resulting in improved quality of life (Factor, Heller, & Janicki 2012; Wehmeyer & Schwartz, 1998). In addition, adults with IDD are experiencing longer life expectancies (Thomas & Barnes, 2010). Despite these gains, adults with IDD still experience health disparities, with higher rates of chronic conditions, comorbid mental health conditions, and lower rates of preventive care than the general U.S. adult population (Croen, Zerbo, Ouian, & Massolo, 2014; Krahn, Walker, & Correa-De-Araujo, 2015; Merten, Pomeranz, King, Moorhouse, & Wynn, 2015). The health disparities experienced by adults with IDD are resulting in an increased focus on ways to improve access to care and care coordination to promote better health and wellness (Krahn et al., 2015).
Currently, the complex needs of adults with IDD are primarily met through the support of family caregivers and Medicaid funded long-term services and supports (LTSS; Braddock et al., 2015). Approximately 71% of indviduals with IDD require the support of a family caregiver (Braddock et al., 2015). It is anticipated that Medicaid spending for LTSS will continue to increase due to longer life expectancies of people with IDD and the aging of the U.S. population (President's Committee for People With Intellectual Disabilities, 2012; Saucier, Kasten, Burwell, & Gold, 2012). The need to address the complex needs of adults with IDD and their family caregivers, while also attempting to control Medicaid LTSS spending, is encouraging more states to reform their Medicaid LTSS programs (Saucier et al., 2012).
Managed care is one mechanism many states are utilizing in reforming their Medicaid LTSS system (Saucier et al., 2012). Managed care has been used for well over a half century in an effort to reform the financing of health and behavioral health services (National Council on Disability, 2013). Providing services in a fee-for-service model can result in poor coordination of services and increased expenditures (President's Committee for People With Intellectual Disabilities, 2012). Alternatively, in managed care, a managed care entity provides services on a capitated rate to coordinate and provide health and behavioral health services to enrollees, with the overall goal of controlling costs and improving the quality of care for a specifically defined enrolled population (Gifford, Smith, Snipes, & Paradise, 2011; Summer, 2011).
However, the use of managed care for LTSS, referred to as Medicaid managed long-term services and supports (MLTSS), is a relatively new services financing and delivery model for adults with IDD (National Council on Disability, 2013). The existing evidence regarding managed care for individuals with disabilities is primarily focused on health care services, and the evidence of managed care's ability to control costs while improving quality of care is mixed (Bindman, Chattopadhyay, Osmond, Huen, & Baccetti, 2004; Burns, 2009a, 2009b; Caswell & Long, 2015; Coughlin, Long, & Graves 2008; Duggan & Hayford, 2013; Lewin Group, 2009; Premo, Kailes, Schwier, & Richards, 2003; Wegman et al., 2015).
The transition to MLTSS from traditional fee-for-service reimbursement for adults with IDD is a growing trend: seven states utilized MLTSS for adults with IDD in 2012; six additional states implemented MLTSS between 2013 to 2015; and four additional states are planning a transition to MLTSS in the next few years (National Association of States United for Aging and Disabilities, 2015; Saucier et al., 2012).
The trend of states transitioning from fee-for-service LTSS to MLTSS for adults with IDD is of concern for many in the disability field. The primary concern regarding MLTSS is the potential for reduced access to care, decreased consumer choice, and less individualization of services and supports, contributing to additional disparities experienced by individuals with IDD (President's Committee for People With Intellectual Disabilities, 2012). However, managed care also holds the potential promise to address health disparities, if it can successfully improve coordination of care across health, behavioral health, and LTSS (National Council on Disability, 2013; President's Committee for People With Intellectual Disabilities, 2012). The move from the traditional fee-for-service reimbursement system to MLTSS potentially may result in transitioning more individuals into community-based care, while using system efficiencies to address unmet needs through the expansion of service offerings and the reduction of wait lists (President's Committee for People With Intellectual Disabilities, 2012).
Advocacy groups, adminitrative agencies, and groups with Medicaid expertise are developing best practices for MLTSS planning, implemenation, and evaluation in response to the recent growth of MLTSS for adults with IDD (Centers for Medicare and Medicaid Services, 2013a; Consortium for Citizens with Disabilities, 2012; Dembner, 2012; National Council on Disability, 2013; Truven Health Analytics, 2013). The best practice recommendations are intended to help states transition successfully to MLTSS, while continuing to meet the needs of adults with IDD and their family caregivers. The Centers for Medicare and Medicaid Services (CMS) provides specific guidance on ten best practices for establishing and implementing MLTSS in order to increase the likelihood of establishing high quality MLTSS programs (Centers for Medicare and Medicaid Services, 2013a). In April 2016, CMS approved new Medicaid managed care regulations, the first updated regulations since 2002, which incorporated these MLTSS best practices (Centers for Medicare and Medicaid Services, 2016).
As MLTSS increases across the U.S., there are opportunities to further explore the experience of implementing MLTSS to inform both policy and practice in light of the new CMS managed care regulations. Each state has flexibility in the design of its MLTSS program including its geographic scope, enrollment options, managed care organization (MCO) corporate structures, nature of stakeholder engagement, and scope of services (National Council on Disability, 2013; Saucier et al., 2012). A study reviewing experiences with MLTSS for adults with IDD and their family caregivers in four states confirmed the diverse experiences with MLTSS (Williamson et al., 2016). Unique characteristics of each state's program can make it difficult to draw conclusions about MLTSS across states, resulting in the current study's focus on MLTSS implementation in one specific state (Connolly & Paradise, 2012).
Among states that have recently transitioned to MLTSS for adults with IDD, Kansas has been referred to as a “bellwether state” given its unique approach (National Council on Disability, 2014a). Previous MLTSS programs are not exclusively statewide, do not exclusively utilize private for-profit companies, and/or do not integrate across LTSS and health care services (Saucier et al, 2012). The Kansas MLTSS program, titled “KanCare”, is the first MLTSS program for adults with IDD to utilize three private-for-profit managed care organizations (MCOs) and to integrate across the full spectrum of services including health, behavioral health, and LTSS statewide (KanCare, 2014). Individuals with IDD began receiving health and behavioral health services in 2013 through KanCare. In addition, full integration, including LTSS, began in February 2014 (KanCare, 2014). Stated goals of KanCare are to improve access to services and better coordinate care for all Medicaid recipients (Centers for Medicare and Medicaid Services, 2013b). Initial evaluations of the KanCare implementation across all disability groups identified difficulties not only with access to providers and prescription medications, but also confusion regarding the care coordination process (Hall, Kurth, Chapman, & Shireman, 2015).
The unique approach to MLTSS for adults with IDD utilized in KanCare coupled with evidence of initial challenges faced during early implementation make it an ideal time to reflect upon the experiences of stakeholders in Kansas. In addition, the recently approved CMS Medicaid managed care regulations also include the CMS 10 best practices for MLTSS implementation. In brief, the CMS ten best practices for MLTSS include: 1) adequate planning; 2) stakeholder engagement; 3) enhance provision of home and community based services; 4) alignment of payment structure and goals; 5) support for beneficiaries; 6) person-centered processes; 7) comprehensive integrated service package; 8) qualified providers; 9) participant protections; and 10) quality improvement strategy. This study's purpose is to assess the implementation of MLTSS for adults with IDD in Kansas in relation to the CMS best practices. Study results highlight the importance of some in particularly critical areas for consideration in the design and implementation of MLTSS.
The Standards for Reporting Qualitative Research (SRQR) provide key elements for inclusion in the reporting of qualitative research methods and guided the reporting of the research methods utilized in this study (O'Brien, Harris, Beckman, Reed, & Cook, 2014). This study employed a case study approach since it is a method recommended for policy implementation studies and for research concerning managed care (Gold, 1999; Kaskutas, Schmidt, Weisner, & Greenfield, 2000). A particular strength of the case study approach is it does not assume that programs or policies have a predictable path in their implementation, so it is open to discovering new information about implementation (Balbach, 1999). In addition, a case study methodology allows for in-depth inquiry of a current phenomenon in a real-world context and is a preferred methodology when there is minimal or no control of events by researchers (Yin, 2014). Case studies discuss and analyze a bounded system over time or at a designated period of time (Compton-Lilly, 2013; Creswell & Maietta, 2002; Stake, 1995). For the purpose of this study, the bounded system or case was Kansas, a state one year into implementing MLTSS for adults with IDD. The primary researcher has a background working with individuals with IDD as a service provider, but has no affiliaton with KanCare or any other managed care entity.
After receiving approval from the institutional review board, recruitment of participants began in January 2015. Three different stakeholder groups were recruited to participate in the study to triangulate understanding of stakeholder perspectives of MLTSS implementation in Kansas (Yin, 2014). Participants who represented statewide or regional groups involved in MLTSS for adults with IDD (Group One) and service coordination providers working directly with families (Group Two) were recruited through direct email contact followed up with a mailed invitation to participate. Participants from group one and group two were identified through publicly available lists associated with the KanCare website. Family caregivers (Group Three) were recruited through advocacy groups and provider groups who distributed a study flyer via mail and email. Snowball sampling was also used where families could share the researcher's contact information with other family caregivers they thought might want to share their KanCare experiences. Family caregivers were provided a $15 gift card for their participation in this study. Inclusion criteria for family caregivers were the following: 1) the primary caregiver of an adult with IDD (over age 22); 2) residing in the family home with an adult family member with IDD; and 3) currently utilizing KanCare.
Participants completed in-depth semi-structured telephone interviews between February and June 2015. Interview protocols were specific to each group to capture differing perspectives, and were pilot tested with individuals who had expertise in MLTSS and IDD. The protocols included questions regarding experiences with transition to KanCare. The lead researcher conducted all of the interviews, and participants provided verbal consent for participating in the study. All interviews were audio recorded.
A total of 31 interviews were completed, ranging in length from 25 minutes to an hour. Thirteen of the interviews were statewide or regional group representatives (Group One), seven of the interviews were service coordination providers who were either care coordinators or targeted case managers (Group Two), and 11 interviews were family caregivers of adults with IDD (Group Three). While there is no consensus on adequate qualitative sample sizes to reach data saturation, it has been found that saturation can be reach in as little as 12 in-depth interviews (Guest, Bunce, & Johnson, 2006). Case studies typically should contain a range between 15-30 interviews (Marshall, Cordon, Ponder, & Fotenot, 2013). The research team identified the sample size as adequate to address the research purpose, given the saturation of themes identified across participants.
An a priori codebook was developed based upon CMS's MLTSS best practices including the larger themes of planning, stakeholder engagement, state oversight, consumer education, care coordination, and access to services. The codebook was updated as interviews were reviewed for final application across all interview transcriptions. The codebook's final version was the fifth iteration, updated after the twenty-second interview was coded and no additional changes were made, indicating that saturation of themes had been achieved.
The overall data analysis process was guided by the framework method, which is designed for qualitative research relevant to policy and health services research (Pope, Ziebland, & Mays, 2000). The framework method is comprised of seven stages: 1) transcription of interviews; 2) familiarization with the interview data through reviewing transcripts; 3) coding the transcripts; 4) developing a working analytic framework (i.e. codebook); 5) applying the analytic framework; 6) charting the transcribed data into the framework matrix; and 7) interpreting the data by reviewing the framework matrices (Gale, Heath, Cameron, Rashid, & Redwood, 2013).
The analyses were completed using the qualitative software NVivo 10 (QSR International, 2014). Framework matrices were structured, with each row representing a participant and each column a new code from the study's codebook. Each theme compromised one worksheet in the excel file and there was an excel file for each group of family caregivers, providers, and state/regional representatives.
In order to improve the trustworthiness of the data analysis, preliminary results were shared with all participants for member checking to confirm accuracy prior to analysis and producing the final study results for dissemination (Lincoln & Guba, 1985). Eleven out of the 31 participants responded with specific edits which were addressed, and then they provided confirmation that the results were reflective of their experience. In addition, a second coder reviewed and coded 10% of the transcripts. Cohen's Kappa was calculated at k=0.73, demonstrating substantial inter-rater reliability (Viera & Garrett, 2005).
Finally, it is critical for transparency of qualitative studies to address the process by which quotes were selected for presentation of study findings (Fujiura, 2015). Once trustworthiness steps were completed, the lead researcher reviewed key themes (planning, stakeholder engagement, state oversight, consumer education, care coordination, and access to services) in light of the CMS best practices. After the themes were reviewed in the context of the CMS best practices, the framework matrices organized by themes were reviewed by the lead researcher to identify summative quotes. The framework matrices allowed the lead researcher to readily review key quotes across participants (both within and between groups) in order to compare and contrast view points and identify illustrative quotes for the current paper. The remaining study team members reviewed final results to confirm agreement, with quotes illustrating key findings.
The findings will review salient CMS best practices that were reflected in the interview data across participants, which will be vital for other states to consider as they plan to implement MLTSS. The CMS best practices will be discussed within the study's themes of planning, stakeholder engagement, care coordination, and access to services.
The Centers for Medicare and Medicaid Services has defined its best practice titled adequate planning (best practice number one) to involve taking thoughtful time to design the program with stakeholder input, ensuring safeguards for a smooth transition, and identifying the readiness of MCOs (Centers for Medicare and Medicaid Services, 2016). This best practice was confirmed by study participants to be of utmost importance in order to ease the transition process and to thoughtfully plan the program to meet the unique needs of adults with IDD.
Participants identified that more time could have been taken to plan the program in order to avoid confusion and concerns. Participants also recommended the use of a phased-in approach in order to learn from implementation experiences and adapt the system prior to full implementation. In taking more planning time, there would be potential to develop a thorough understanding of the current system in order to identify gaps that needed to be addressed and also to ease the transition process.
Where the gaps are… What does the provider network look like and where has the state experienced gaps in care? …So the managed care companies know in advance where they can have the most impact and where are the priority areas that they need to address. (State/Regional-13)
In order to address MCO readiness, it was important for the MCOs to hire or work with individuals who have expertise in IDD. The participants identified the MCOs had a lot to learn about people with IDD and also needed to work to adapt their practices to meet the unique needs of adults with IDD. The MCOs having IDD specific teams who had expertise in working with the IDD population is an important factor to consider for entities entering the MLTSS marketplace, who may not have extensive experience addressing the LTSS needs of adults with IDD.
Additionally, more time for planning could have allowed for more opportunities to establish effective consumer education and enrollment strategies (best practice number five, support for beneficiaries). Support for beneficiaries encompasses providing conflict-free education on enrollment and disenrollment, accessible and ongoing education, and an independent ombudsman to address participant concerns (Centers for Medicare and Medicaid Services, 2016). Participants identified the important of proactive education efforts and recommended partnering with existing advocacy groups on education efforts. If enrollment efforts were planned with stakeholders, then there would have been more transparency and less confusion.
There's no transparency. There's no ability for the people that are guardians to be able to look up and see, this is who I can call if I have a question about that. (Family-01)
Providing more time for planning was also identified as a means to also allow for more thoughtful use of stakeholder input provided during stakeholder engagement efforts. Clearly, states need to carefully consider the amount of time it will take to plan for the design and implementation of MLTSS efforts. Adequate planning would allow for consideration of other key themes identified by participants including stakeholder engagement, care coordination processes and access to services.
At least what they should have done was taken more time…They rushed the entire KanCare thing…Without much thought, without much discussion. (Provider-03)
The new CMS regulations includes stakeholder engagement as best practices number two. Stakeholder engagement is recognized as important to inform the development, implementation, and evaluation of MLTSS efforts (Centers for Medicare and Medicaid Services, 2016). Stakeholders include adults with IDD, family members, providers, and advocacy groups. In the best practices (now regulations), CMS does not provide specific guidance on the duration or frequency of stakeholder engagement besides noting its importance throughout the design and execution of MLTSS efforts. In KanCare, due to the shortened timeline established for planning, there were stakeholder engagement efforts, but participants did not feel their feedback was heard or they were not clear as to what happened with their feedback.
There were a lot of meetings. Opportunities to provide input, but we don't feel like anything was done with that input. (State/Regional-05)
You would try to assist them in the development of things that they need to look at. The only answer that we would get is, ‘We'll look at it and we'll get back to you,' and they never did. (Provider-01)
The meetings we attended...It was so obvious that they (administration) really weren't considering what people - what the rest of us were actually trying to convey to them. (Family-03)
Participants identified stakeholder engagement efforts occurring, but did not feel there was enough time to consider their input to help inform the design and implementation of KanCare. If more time had been included in the planning stages, then stakeholders would have felt that there was time to include their feedback in the design of KanCare. Effective stakeholder engagement is also a mechanism to help establish trust in the new MLTSS system. States at a minimum should establish state-sponsored stakeholder workgroups to help inform the design and oversight of the MLTSS programs. The MCOs or other managing entities should have their own stakeholder engagement groups who can provide regular oversight to the program to help address quality concerns.
A key promise in MLTSS is better coordination of care to help address cost and quality of care outcomes. Care coordination begins with ensuring a person-centered approach to the assessment and planning process (Centers for Medicare and Medicaid Services, 2016). The person-centered processes (best practice number six) must address physical, psychosocial, and functional needs in order to create a service plan that encompasses both medical and non-medical needs. Prior to KanCare, all assessments were completed with the individual with IDD, their family caregiver (as necessary), and their assigned targeted case manager (TCM). The TCM was responsible for identifying eligibility for long-term care services through the BASIS assessment and also completing the Person-Centered Support Plan, which includes the adult with IDD's goals for the coming year.
After the establishment of KanCare, individuals with IDD kept their TCM and were also assigned a care coordinator (CC) from the MCO who was responsible for completing a Health Risk Assessment (HRA) focused on their health care needs. The CC would utilize the results of the BASIS and HRA to develop an Integrated Service Plan (ISP), which covered both medical and non-medical supports and services. According to participants, there was overlap in the questions asked by both the TCM and CC and the Person-Centered Support Plan was separate from their Integrated Service Plan. The number of assessments combined with the overlap between efforts of the TCM and CC created confusion and frustration in the person-centered planning processes.
Beyond the person-centered planning process, care coordination in MLTSS also involves managing the provision of a broad array of supports referred to in best practices number seven as a providing a comprehensive integrated service package (Centers for Medicare and Medicaid Services, 2016). Services and supports need to be available to address transitions between living settings. Additionally, states need to provide oversight and monitoring of any service reductions. In KanCare, participants identified the goal of integrated care and saw opportunities for the MCOs to better integrate across health and LTSS. In order to provide full integration of services and supports, families maintained the case management services provided by their TCM in conjunction with a designated CC from the MCO. The ongoing involvement of the TCM was important as TCMs often had worked with individuals with IDD and their families for years and had a thorough understanding of their support needs and strategies to address them.
The amount of knowledge that a case manager has about an individual just can't be replaced by a piece of paper, someone who sees them one time every six months or one time a year. So, that was a big piece that we were able to maintain targeted case management. (State/Regional-09)
However, families interpreted having a CC along with a TCM as another layer of bureaucracy and lacked understanding of what the CC role was or what the CC could do to assist them. Participants identified that CCs had difficulty finding time for families given their large caseloads. Some CCs provided specialized services (behavior management), and had caseloads of 80 families, whereas those without specialization could have up to 140 families on their caseload. TCMs typically had caseloads of 30 families or less, allowing them more contact with families. TCMs reported monthly (at a minimum) in person contact with families, and CCs reported a minimum in-person contact two times a year. The large caseloads made it difficult for CCs to know families and there was also CC turnover reported.
To be honest, if you have 100 or 120 people on your caseload as a Care Coordinator, how do you know what their specific needs are? (Provider-01)
We've only really only met the Care Coordinator once, and that was when they did the assessment. We have a new one now. (Family-05)
Finally, to provide a comprehensive service package, all three MCOs offered value-added services in KanCare for adults with IDD. These valued added services included: adult dental care; health promotion and preventive services including smoking cessation, chronic disease management, and weight management; “practice visits” where an individual with IDD could practice what it would be like to visit an OB-GYN or a dentist to reduce anxiety and encourage regular specialist visits; and hospital stay support which involved paying support staff to accompany an individual with IDD while they were in the hospital. Participants identified challenges with accessing these value-added services due to provider availability and lack of understanding on how to access and/or get paid for these value-added services.
The MCOs were working to provide a coordinated comprehensive and integrated service package, but there were challenges in achieving this outcome. The continuity of care coordination with the TCM was critical for families to maintain services and supports. At the time of this study, the team care coordination process with the TCM and CCs was confusing to participants. States should consider clarifying roles of care coordination staff with individuals with IDD and their families, carefully plan person-centered assessment processes, and provide guidance on appropriate caseload sizes.
Access to Services
In order to allow for full access to services, the MCOs are supposed to ensure a provider network of qualified providers (CMS best practice number eight) and to also support providers through the transition process (Centers for Medicare and Medicaid Services, 2016). The MCOs were required to offer contracts to all existing providers in the state to ensure provider network adequacy. In KanCare, there was an effort to try to establish consistency in providers across the state that was not yet achieved given the existing limited provider availability. Provider enrollment in KanCare was not mandatory, and providers could also choose to contract with only one or two of the MCOs. Providers were not always willing to work with individuals with more complex needs.
Some people have a really significant behavioral or medical needs, and some providers are not equipped to deal with that… the reality is that providers can pick and choose based on what that person's need is and whether or not they think they can actually provide that person the service. (Provider-03)
Participants identified concerns with health providers not in the system, but did not discuss loss of LTSS providers. The state instituted a continuity of care time period for individuals with IDD in KanCare, as maintaining existing providers was critical to individuals with IDD and their families, whom often worked years to put together a team of providers and health care resources.
We had built a resource group… and it was tough because sometimes the community isn't aware of how to help a person with special needs. So it's a long process to even establish a list of resources that you can rely on. (Family-02)
KanCare included state oversight into any reductions or changes to LTSS by MCOs. The MCOs needed to continue to offer the same level of LTSS until the state reviewed and approved or denied the request. The state review also included transition of services from one setting to another. Families participating in this study had mixed experiences with LTSS access. Some individuals saw no changes in actual services and supports received, while others were offered new services. However, there were challenges in acquiring workers to provide the approved services.
They give you the service; the opportunity to have it, but finding somebody to provide service is a different story… finding somebody who could provide that service, who can fit their plan, what their description of that provider should be is a different story. (Family-06)
The provision of home and community-based services (HCBS) should work to ensure civil rights afforded through the Americans with Disabilities Act, promote community-based services based upon the Olmstead decision, and encourage community-integrated employment (CMS best practice number three, enhanced provision HCBS; Centers for Medicare and Medicaid Services, 2016). In KanCare, the MCOs invested in employment initiatives through grant funding opportunities to reform employment systems in the state in order to create more community-integrated competitive employment opportunities. At the time of this study, no outcomes were available from these initiatives.
Access to services also includes ensuring safeguards to protect participant health and welfare, having a critical incident management system, and providing a fair hearing process with continuity of care during the appeal process (CMS best practice number nine, participant protections; Centers for Medicare and Medicaid Services, 2016). In KanCare, the issue of crisis exception was discussed in which an individual with IDD could be taken off the wait list for services if they were experiencing some form of crisis. Prior to KanCare, if the crisis/exception request was reviewed by the state and approved, then the individual would be taken off the wait list and granted access to needed services and supports. After implementation of KanCare, participants reported these crisis determinations were taking much longer to obtain, leaving some members in emergency situations.
In the early stages of the KanCare implementation, there were efforts under way to establish a comprehensive provider network to ensure access to services, but challenges remained in provider availability to families. Protections were in place for continuity of care, but it was difficult for those in emergency situations needing to enroll in the system to do so in a timely manner. States considering MLTSS need to identify their existing provider network adequacy and pro-actively work to enhance provider availability for participants.
The CMS MLTSS best practices discussed in this study around the themes of planning, stakeholder engagement, care coordination and access to services were recently published in new CMS regulations (RIN 0938-AS25; Centers for Medicare and Medicaid Services, 2016). In this study, participants reflected on eight of the 10 best practices indicating their relevance to implementation of MLTSS for adults with IDD. The two best practices not discussed by participants, alignment of payment structures and goals and quality improvement strategy, were likely not discussed given the early implementation focus of the current study.
Given the results of the current study, other states considering MLTSS for adults with IDD should utilize lessons learned from the KanCare implementation experience to further inform their MLTSS program. Some of the challenges that participants experienced likely could have been alleviated if there had been longer planning timelines and more meaningful stakeholder engagement efforts. Stakeholder engagement efforts might have been more meaningful if stakeholders could identify how their feedback contributed to system changes. Currently, there are no standards for stakeholder engagement in MLTSS. However, one mechanism identified could involve states providing travel funding support or small stipends to stakeholders to improve sustainability of engagement efforts (National Council on Disability, 2014b).
Effective care coordination will be critical for MLTSS programs to provide a comprehensive integrated service package. To date, there were difficulties with identifying the roles of care coordination team members in KanCare. Ongoing access to existing TCM services prior to MLTSS implementation was critical, as caseloads for MCO CC were at times too large for them to have adequate time to spend getting to know families and addressing their needs. In a recent review of existing processes for implementing care coordination in MLTSS, Saucier and Burwell (2015) identified significant variability in care coordinator caseloads and roles across states. It has been proposed that states, at a minimum, need to identify care coordinator qualifications, caseload sizes, and expectations for frequency of contacts with individuals and their families in MLTSS (Saucier & Burwell, 2015). The National Council on Disability (2014b) identified a recommended caseload of one CC for every 40 members with IDD in MLTSS. Additionally, states could consider using an evidence-based approach for coordinating health and behavioral health services for individuals with IDD like the Systemic, Therapeutic, Assessment, Resource, and Treatment (SMART) program (The Center for START Services, 2016).
Achieving full access to the broad services available in MLTSS will not be realized without developing an adequate provider network. Establishing a provider network of health, behavioral health, and LTSS providers for adults with IDD won't be achievable without increasing the capacity of providers to work with this population. The Office of Inspector General (2014) evaluated access to primary care providers and specialists in managed care in 32 states. Over half were not offering appointments for managed care enrollees. Improving provider capacity will make health care more accessible to address ongoing health disparities faced by individuals with IDD (Krahn et al., 2015; United Nations, 2006). A provider network with adequately available providers will allow for consumer choice that can result in higher consumer satisfaction (McDonnell & Graham, 2015). Accessible consumer education efforts are also needed to ensure consumers are making informed choices (Peterson & Hyer, 2015).
There are limitations to this study that are helpful to guide future research efforts. The current study reviewed the experience of one state and took a cross-sectional view of implementation. Future research should explore additional state experiences while also completing more longitudinal follow-up with participants to identify common issues across states and to capture experiences after the initial transition. If a state completes a roll out implementation of MLTSS, expanding the program by county or regional basis, then future research should compare the experiences with care coordination and access to services in MLTSS areas versus fee-for-service areas.
Participation bias is also a concern, as those who chose not to participate in the current study could have very different implementation experiences than individuals who participated in this study. In addition, the lead researcher was unable to obtain the perspectives of adults with IDD due to funding limitations and the need for telephone interviews. Ideally, future studies might include perspectives of individuals with IDD and also evaluate MLTSS for those individuals with IDD not residing in the family home. Nevertheless, results from this study can inform future survey efforts of MLTSS programs.
A key strength of this research is the study timing during a rapid expansion of MLTSS across states and the recently approved CMS MLTSS regulations. Results demonstrate some of the important implementation issues that arise as MLTSS is undertaken. Active planning and engagement appear to be critical to successful implementation. Longer planning timelines would allow for a more thoughtful and engaged approach to assisting families through the transition process. This, in turn, should help alleviate confusion about how and from whom to obtain services, and might also allow service providers more opportunity to build their networks.
While there are emerging practice models for care coordination in managed care, no standard approach has been proposed, and more evaluation is needed to identify effective care coordination approaches (Saucier & Burwell, 2015). In order to ensure access to services, provider network development efforts should be identified and strategies to enhance provider capacity shared. Identifying successful stakeholder engagement strategies for future MLTSS planning, implementation, and evaluation is needed.
Results of this study can be used to inform future MLTSS policy and practice decisions. It can be challenging to make state-specific Medicaid research relevant to policy makers due to vast differences in approaches to MLTSS available to states (Gold, 1999). However, new CMS (2016) managed care regulations are promoting a more standardized approach to MLTSS and results from this study support key aspects of the new regulations while providing more specific reflections on particular strategies for states. Continued growth in MLTSS, with lack of standardized evaluation processes to evaluate quality, means that areas for future research should explore designing evaluation instruments reflective of these best practices (Kaye & Harrington, 2015).
For Dr. Williamson, the University of South Florida's College of Public Health Department of Community and Family Health Graduate Student Research Award and the University of South Florida's College of Public Health Student Research Scholarship supported this doctoral dissertation.
For Dr. Perkins, this project was supported by a grant awarded to the Florida Center for Inclusive Communities, A University Center of Excellence in Developmental Disabilities Education, Research, and Services (#90-DD-0668) by the Administration on Intellectual and Developmental Disabilities, Administration for Community Living, Department of Health and Human Services.