AARP PUBLIC POLICY INSTITUTE APRIL 2018 Long-Term Services and Supports Scorecard Innovative and Promising Practices Taking It to the Next Level: Using Innovative Strategies to Expand Options for Self-Direction Merle Edwards-Orr Kathleen Ujvari Applied Self Direction AARP Public Policy Institute www.longtermscorecard.org THIS PAGE INTENTIONALLY LEFT BLANK INNOVATIVE AND PROMISING PRACTICES Having Choice and Control My Way Rita knows what she wants from her personal care workers. As a 73-year-old former college English teacher and phlebotomist, she wants them to be on time, do the work she hired them to do, and do it well. Because she lives in a small apartment, Rita wants her employees to be people she can get along with, yet she also desires a basic mutual understanding with them: “I don’t pay them to visit; I pay them to work.” Fortunately, Rita is a participant in the Texas STAR+ PLUS, Consumer Directed Services (CDS) program, which allows her to find workers that meet her expectations. Rita selects her employees carefully and is willing to pay them more than they might make elsewhere. Her reputation for being a good employer enables Rita to find personal care workers through word of mouth, rather than through local advertising. RITA WITH HER DOG SANDY Having the kind of workers she wants and needs has not always been the case for Rita. Before enrolling in CDS in 2010, Rita used an agency to provide workers, but she found the arrangement unsatisfactory. Frustrated that she wasn’t in charge of her workers, Rita found herself, in her words, “negotiating” her care with the agency care manager—especially when workers were frequently late or did not show up and did not call. Now that Rita is in control, her employees know her expectations early on. Using a flexible and creative team approach that works for everyone, Rita has workers who enjoy cooking to prepare her meals (she eats vegan) and those who are good housekeepers to do housekeeping. At any given time, Rita has about four employees on her payroll to support her needs, which also allows workers to have flexibility in their schedules. Rita recommends CDS to anyone who qualifies for the program. Paperwork can be daunting, especially for some older adults, but she points out that participants can appoint a family member or a friend as their representative to help with that task. What is important is that program participants can hire the workers they want. Rita revels in having choice and control over managing her workers, but she knows that she and they form a team: she has to care for them so they can care for her. Being able to pay her workers adequately, assigning them to the tasks they like, and scheduling them flexibly, Rita has developed for her employees a support structure that keeps them happy and for herself, a safe and healthy home. TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION i INNOVATIVE AND PROMISING PRACTICES About This Paper In 2016, roughly 1 million people were enrolled in Medicaid-funded and Veteran-Directed Home- and Community-Based Services (VD-HCBS) self-directed programs. While the number of people self-directing their services nationally has increased by more than 40 percent since 2011, in 2016 fewer than 27 out of every 1,000 people with any disability were self-directing their long- term services and supports (LTSS). That said, counts vary widely across states, with California reporting 132 out of every 1,000 people with disabilities (about 1 in 8) received self-directed services, while in several states, fewer than 1 out of every 1,000 people with disabilities received self-directed services. This is all in spite of studies consistently showing that people who self-direct their services are more satisfied with them, experiencing equal or improved outcomes than people whose services are directed by an agency. Nonetheless, the highly individualized nature of each service plan and concerns about the ability of plan participants to manage their services effectively can create barriers that hinder states to take their programs to the next level. This paper describes programs in four states—Texas, Iowa, Wisconsin, and Florida—that take innovative approaches to self-direction. It discusses the strategies these states used to develop and expand their programs, coordinate and personalize services, promote stakeholder engagement and outreach, and implement effective training. Using interviews with leaders and participants, this paper highlights some innovative and promising practices along with a sample of self-directed program resources that can be used for training, education, collaboration, and replication. These tools are offered as a guide for states seeking to develop, improve, or expand their own self-directed LTSS programs. Finally, for each program, we offer a point of contact for additional information and guidance. Acknowledgments The authors would like to acknowledge Pamela Doty, policy analyst, with the Office of the Assistant Secretary of Planning and Evaluation (ASPE) in the US Department of Health & Human Services for reviewing this paper. ii TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES Table of Contents HAVING CHOICE AND CONTROL MY WAY..................................................................................................... i ABOUT THIS PAPER ...................................................................................................................................................ii ACKNOWLEDGMENTS .............................................................................................................................................ii INTRODUCTION ........................................................................................................................................................... 1 History of Self-Direction..................................................................................................................................... 1 Recent Study Findings ........................................................................................................................................ 1 Program Benefits ..................................................................................................................................................2 Choice and Control ..............................................................................................................................................3 Self-Directed Services: A Key Part of a High-Functioning LTSS System .............................................3 Identifying Innovative and Promising Practices ........................................................................................4 STATE INNOVATIONS IN SELF-DIRECTION PROGRAMS AND PRACTICES..................................... 5 Texas: Achieving Success in a Managed Care Environment ....................................................................5 Slow and Methodical Rollout ...................................................................................................................... 5 Service Coordination ..................................................................................................................................... 6 Emphasis on Quality ..................................................................................................................................... 7 Robust Participant and Stakeholder Involvement .............................................................................. 7 Iowa: Expanding Access to Self-Direction across Populations Using a Flexible Approach ..............7 Developing One Self-Direction Option to Serve Many Populations .............................................. 7 Using Budget Authority to Maximize Participant Choice ................................................................. 8 A Program Cornerstone: Developing a Strong Support Network around the FMS Provider .... 8 Wisconsin: Putting the Person at the Center................................................................................................9 Maximizing Choice ....................................................................................................................................... 10 Supporting Participant Decision-Making Instead of Bureaucratic Rules .................................. 10 Offering Strong Supports ........................................................................................................................... 10 Florida: Get Going and Get Growing Strategy ............................................................................................ 11 James A. Haley Veterans Hospital and Senior Connection Center Inc. Tampa, Florida ........ 11 Striking While the Iron Is Hot.................................................................................................................... 11 Developing and Trusting the Partnership ............................................................................................ 12 Proving Value ................................................................................................................................................. 12 CONCLUSION ............................................................................................................................................................... 14 CONTACTS .................................................................................................................................................................... 14 APPENDIX: NATIONAL INVENTORY OF SELF-DIRECTED PROGRAMS FOR THE 2017 STATE LONG-TERM SERVICES AND SUPPORTS SCORECARD ............................................................. 15 LIST OF TABLES Table 1 National Inventory of State Self-Directed Program Comparisons 2011–2016. ........................... 15 Table 2 Programs by Funding Source 2016. ...................................................................................................... 18 Table 3 Population Served by SD-LTSS Programs........................................................................................... 18 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION iii THIS PAGE INTENTIONALLY LEFT BLANK INNOVATIVE AND PROMISING PRACTICES Introduction HISTORY OF SELF-DIRECTION While self-direction has been around in one form What Is Self-Direction? or another since the 1970s, it has only been since Built on the premise that people receiving LTSS the Cash and Counseling Demonstration and know their needs best, self-direction—also known Evaluation (CCDE) near the turn of the 21st century as participant direction or consumer direction—is that self-direction has become a fundamental an approach to home- and community-based program element for home- and community- services that maximizes the degree of choice and based services (HCBS). A random control trial control that participants have over what services experiment looking at over 6,500 Medicaid-eligible they receive, who provides the services, and individuals with long-term services and supports when, where, and how services are provided. This (LTSS) needs in three states, the CCDE showed that is usually accomplished by program participants when compared with people receiving traditional receiving a budget for services and having control agency-based services, self-directed LTSS programs over how that budget is spent. allowed participants to receive more services— and be more satisfied with those services—while experiencing equally good or better outcomes.1 Since then, the Centers for Medicare & Medicaid has increased 43 percent from 2011 to 2016, to just Services (CMS) and the Veterans Health over 1 million people. The number of programs Administration (VHA) have worked to expand that offer self-directed services on a statewide available self-direction options for the older adults basis is also increasing. Specifically, of the 253 self- and people with disabilities they serve. directed LTSS programs, 229 (91 percent) reported on whether the program was offered statewide. RECENT STUDY FINDINGS Of those responding, 189 programs (75 percent of Self-directed program enrollment is on the rise. A all programs) reported that they offer self-directed 2016 National Inventory of self-directed programs services statewide. In 2013, only 116 programs conducted by the National Resource Center for (44 percent of all programs) reported operating Participant-Directed Services for the 2017 State statewide.3 Long-Term Services and Supports Scorecard (“Scorecard”) reported that there were 253 self- directed LTSS programs nationally, operating in every state and the District of Columbia, The availability of programs offering representing an 8 percent increase since 2011 self-directed services on a statewide (Appendix).2 Despite low growth in the number of self-directed LTSS programs, enrollment in basis is increasing throughout the Medicaid-funded and Veteran-Directed Home- and United States. Community-Based Services self-directed programs 1 R. Brown, B.L. Carlson, S. Dale, L. Foster, B. Phillips, and J. Shore, Cash & Counseling: Improving the Lives of Medicaid Beneficiaries Who Need Personal Care or Home and Community Based Services (Princeton, NJ: Mathematica Policy Research, 2007). 2 National Resource Center for Participant-Directed Services, “National Inventory of Self-Directed Programs for the 2017 State Long- Term Services and Supports Scorecard: Publicly Funded Self-Directed Long-Term Services and Supports Programs in the United States, Final Report” (unpublished), National Resource Center for Participant-Directed Services, Boston College, Boston, December 2016. 3 Ibid. TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 1 INNOVATIVE AND PROMISING PRACTICES The 2016 National Inventory survey also found also offered financial management services (FMS), that the growth in Medicaid-managed long-term which are used to manage the payroll of their services and supports (MLTSS) does not appear direct care workers, including ensuring that taxes to have had much impact on self-directed LTSS are paid and applicable hiring rules are followed. program enrollments.4 Specifically, in August Evidence shows that self-direction is an effective 2016, the National Association of States United for Aging and Disabilities (NASUAD) State Medicaid way to provide LTSS.7,8 However, the highly Integration Tracker© reported that 21 states individualized nature of each service plan and were either operating or implementing MLTSS.5 concerns about participants’ ability to manage Comparisons between 2013 and 2016 state these services effectively can create barriers enrollments show that of the 21 MLTSS states, that prevent states from taking their programs self-directed LTSS program enrollment increased to the next level. Careful planning, thoughtful in 16 states (76 percent of states) and declined in use of support services, and sound feedback—or 5 states (24 percent). Overall, MLTSS states saw feedback and improvement loops, which include enrollment grow, on average, by over 80 percent. both participants and their support services—can Of the 30 non-MLTSS states, 20 states (67 percent) ease complexity and minimize risk. Outreach is showed an increase in program enrollment and equally important, as usually people who need 10 states (33 percent) a decrease. Overall, non- LTSS and their caregivers need to know that MLTSS states increased program enrollment by self-directed program options are an alternative 110 percent.6 to traditional HCBS programs and that these alternative options may be available. PROGRAM BENEFITS Although self-directed LTSS benefits vary by state and program, they always include either a service hour or dollar budget that can be used Growth in MLTSS does not appear at the discretion of the participant to purchase to have had much impact on self- a range of services. Generally, budgets are used directed LTSS program enrollments. to hire staff or a family member, if permitted by the state, to provide personal assistance; in some cases, funds can also be used to purchase goods and services to help participants maintain By highlighting how four successful self- their independence. Almost all programs offer direction programs have implemented strategies participants supports to develop and manage their to address these issues, this paper can inform LTSS spending plan. For example, participants programmatic and policy development in are offered information and assistance services states seeking to expand self-directed service (sometimes called support brokerage, case options. It can also help state administrators management, or consultation services) that can by providing strategies, tools, and the names of help them develop their service plans. They are experts and their contact information. 4 Ibid. 5 Ibid. 6Ibid. 7 Self-direction contributes to increased HCBS utilization, lower per person cost of providing LTSS, and reduced nursing home utilization. 8 Mark Sciegaj, Suzanne Crisp, Merle Edwards-Orr, and Casey DeLuca, “Three Emerging Themes from Implementing Self-Directed Long-Term Service and Support Programs Under Managed Care,” Public Policy & Aging Report 26, no. 4 (2016): 134–37, https://doi.org/10.1093/ppar/prw019. 2 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES CHOICE AND CONTROL member, if permitted by the state (an option Self-direction grew out of the independent living that many participants choose). movement and shares many of its values, as self- • When: Participants can determine when direction seeks to maximize personal choice and they prefer to have services delivered. If control over the supports and services that work they prefer to go to bed late, they can hire a best for participants. Self-direction begins with family member, if permitted by the state, or a person-centered plan that is developed jointly a neighbor to come in and help with their by the participant and the program planning evening routine whenever they like. team (often referred to as the circle of support); this plan outlines the participant’s goals and • Where: Participants can determine if they objectives. A person-centered plan can provide a want their services at home or elsewhere (e.g., level of autonomy many of us take for granted, at work or at school, or to enable engaging in as it gives participants in a self-directed program out-of-home activities such as grocery shopping control over what services they receive, who or going to the local YMCA for exercise). provides the services, and when, where, and how • How: Participants can choose how services are these services are provided: provided. For example, participants can make • What: The participant can choose what their own decisions over how funds in their services to use to meet his or her needs or self-directed services budget are spent. preferences. For example, does the participant People without disabilities can routinely make want home-delivered meals, or would she or he these decisions. Self-direction helps ensure that rather pay an aide to cook? having a disability does not limit a person’s • Who: The participant can elect service control over daily life choices. providers available in the state’s self-direction program or hire his or her own staff or family SELF-DIRECTED SERVICES: A KEY PART OF A HIGH-FUNCTIONING LTSS SYSTEM The Scorecard identifies self-direction as a key Key Principles of Self-Direction component of a high-performing LTSS system.9 In a high-performing system, a person-centered 1) People who receive services know best approach allows people with LTSS needs to what services they need and how they receive services in the setting of their choice and should receive them. from the providers they choose. Because of the 2) When given the opportunity to manage importance of giving people who receive publicly their services, they will do so efficiently and funded HCBS choice and autonomy over directing effectively. their own services and care arrangements, the Scorecard, since 2011, has included a self-direction 3) Supports in such areas as service planning and resource management should be indicator. Data for the indicator were based on a flexible and available, to enable participants national inventory of self-directed programs in the to manage their services when needed. United States conducted by the National Resource Center for Participant Directed Services.10 9 Susan C. Reinhard, et al., Picking up the Pace of Change: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers (Washington, DC: AARP Public Policy Institute, June 2017). Prior editions (2011 and 2014) of the Scorecard are available at http://www.longtermscorecard.org/. 10 The 2013 and 2016 National Inventories were conducted to support the development of the 2014 and 2017 State LTSS Scorecards. TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 3 INNOVATIVE AND PROMISING PRACTICES In 2016, roughly 1 million people were enrolled choice and has developed a strong support in self-directed programs nationally.11 While the network around its FMS provider. number of people self-directing services nationally Include, Respect, I Self-Direct (IRIS) has increased by more than 40 percent since (Wisconsin). A self-directed services program 2011, in 2016, fewer than 27 out of 1,000 people where the participant’s needs and goals are the with any disability received self-directed services principal focus, IRIS maximizes choice from the through a publicly funded program.12 This is beginning of the participant’s experience by using not for lack of demand, as most self-direction shared decision making instead of bureaucratic programs report having waiting lists. Programs rules to resolve difficult issues and by offering that do not have enrollment limits continue to strong support to enable the participant to be in show significant growth. Many stakeholders— charge. including state and federal officials, advocates, and consumers of HCBS—want to develop self- Veteran-Directed Home- and Community- direction programs, expand capacity, establish Based Services (VD-HCBS) (Florida). VD-HCBS and implement service coordination, and roll out is a self-directed services program formed through training and quality monitoring. a partnership between the local Veterans Affairs Medical Center and its neighboring aging and IDENTIFYING INNOVATIVE AND PROMISING disability network agency. Factors contributing to PRACTICES the program’s startup success include the partners Using information from the 2016 National promptly acting on an opportunity, developing Inventory and feedback from state program and trusting in the partnership, and quickly leaders, Applied Self Direction and the Scorecard proving the program’s value. team identified programs in four states with The authors of this paper interviewed officials innovative self-directed program approaches from the four programs for details on issues that and strategies to develop and expand programs, cut across self-direction programs, including: coordinate and personalize services, engage • Program development and growth; stakeholders, and implement training programs. These programs are: • Program support and expansion in an environment where MLTSS has increasing STAR+ PLUS Consumer Directed Services influence; (CDS) (Texas). This MLTSS program requires managed care providers to offer service • Effective coordination of all program coordination as a basic service. The program components, including participants, case emphasizes quality and has robust participant managers/support brokers, and FMS providers, and stakeholder involvement. to ensure quality; Consumer Choices Option (CCO) (Iowa). A • Participant and stakeholder engagement in the single self-direction program founded on person- development and oversight of self-direction centered principles, CCO serves six of the state’s programs; and seven LTSS populations. It uses budget and • Developing LTSS options tailored to meet employer authority to maximize participant participant and family member needs. 11 National Resource Center for Participant-Directed Services, “National Inventory.” 12 Note that not all people with disabilities have LTSS needs. 4 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES State Innovations in Self-Direction Programs and Practices TEXAS: ACHIEVING SUCCESS IN A MANAGED allowed the state to replicate the program from CARE ENVIRONMENT county to county and region to region, keeping and emphasizing program components that worked well and modifying those that needed improvement. Texas is a big state, both in population and in area, so a smaller state may As states began to move increasingly toward not need to measure its rollout period in decades. MLTSS, many supporters of self-direction However, Texas’s do-no-harm approach allowed expressed concern that managed care plans lacked its self-direction programs to grow significantly expertise in LTSS. This led to fears that the shift to while it was transitioning its population to MLTSS would give self-direction the short shrift. MLTSS. Texas is currently working toward Texas is a case in point. At the time the Lone Star implementing MLTSS to serve individuals with State began a transition toward MLTSS, it already intellectual and developmental disabilities, and had in place a number of self-direction programs, will maintain its strong commitment to self- known collectively as Consumer Directed Services direction during these transitions. Texas has also (CDS), aimed at several populations. The concern started STAR Kids, a new MLTSS program for was that moving them into a managed care children. structure would undermine the core principles of the self-direction model. As it would turn out, however, Texas’s experience Managed Long-Term Services demonstrates that this need not be the case: and Supports virtually all of Texas’s LTSS population of older adults and people with disabilities is now covered Beginning in the 1990s, states began under the state’s STAR+ PLUS MLTSS program, experimenting with moving LTSS from a fee-for- and, in fact, self-direction under this system is service approach to a managed care approach. thriving, with over 17,000 Texans managing their In MLTSS, the state determines which Medicaid own care.13 LTSS it will provide, generally through a While there have been many reasons for this combination of state plan and waiver services, successful transition, four offer particular guidance: and then contracts with one or more Managed Care Entity (MCE) to provide and pay for those • Slow and methodical statewide rollout, services. The state pays the MCE through • Strong service coordination, some variation of a per member/per month • Emphasis on quality, and rate. Participants, after going through a state eligibility process, select which MCE they want • Robust participant and stakeholder to receive their services through (assuming involvement. more than one is available) and work with MCE case managers to develop and implement their Slow and Methodical Rollout service plans. If self-direction is a state service, Texas began converting its Medicaid programs then participants would work with the MCE to to managed care in the 1990s and completed set up their self-directed plan. the move to statewide coverage in 2014. This 13 Enrollment count is based on 2016 program enrollment data collected for the National Inventory for the 2017 State LTSS Scorecard. TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 5 INNOVATIVE AND PROMISING PRACTICES Who Does What in Texas STAR+ PLUS ROLE OF THE STATE ROLE OF THE PARTICIPANT ROLE OF THE MCE Determine Which LTSS Work with State to Assess Participant’s Will Be Offered Become Eligible for LTSS Specific Needs Contract with Managed Work with Participant to Select MCE Care Entity/Entities (MCE) Develop Service Plan Assess Participant Work with MCE to Monitor Quality of Eligibility for LTSS Determine Mix of Services Services Delivered (shared by state through its He/She Will Receive designee, Texas Medicaid Healthcare Partnership and the MCE) Pay Service Providers Implement Self-directed Portions of Care Plan Facilitate Development of FMS Provider Network Oversee the Network of (provide mandatory enrollment FMS Providers training and periodic technical assistance training to FMS providers contracted with MCEs) Service Coordination Years of work in the field have shown that the Texas Star+ PLUS and CDS Toolkit: manner in which self-direction options are STAR+ PLUS Handbook with CDS Overview initially offered to a consumer is very influential STAR+ PLUS FAQs to whether they ultimately choose to self-direct.14 MLTSS service coordinators, therefore, are a CDS Option Website - General Information key component to the success of self-direction CDS FAQs programs. CDS Option Roles and Responsibilities As part of the move to MLTSS, Texas required CDS Option Website - Detailed Information its managed care providers to offer service CDS Forms and Handbooks coordination as a basic support service. This gives CDS Option Technical Assistance Webinars program participants a reliable point of contact who can answer questions, offer program options Texas Council on Consumer Direction Website that meet their day-to-day needs, and help plan with Archived Webcasts for future goals. Service coordinators are expected Video of December 2017 Texas Council on to be well-versed in self-direction and clearly offer Consumer Direction Meeting the CDS option to consumers. Council on Consumer Direction Videos of Archived Meetings 14 Frank Thompson, Pamela Nadash, Michael K. Gusmano, and Edward Alan Miller, “Federalism and the Growth of Self-Directed Long- Term Services and Supports,” Public Policy & Aging Report 26, no. 4 (2016): 123–28, https://doi.org/10.1093/ppar/prw020. 6 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES Emphasis on Quality Council meetings are open to the public and With participants in self-direction programs in webcasted live to facilitate statewide engagement; control of services they receive, achieving and videos of archived meetings are publicly available. maintaining a quality program begins with the participant. In Texas, the role of support IOWA: EXPANDING ACCESS TO SELF- DIRECTION ACROSS POPULATIONS USING A services, including those of service coordinators FLEXIBLE APPROACH and FMS providers, is to ensure that participants have the knowledge and skills they need to effectively manage their services. At a minimum, participants are expected to be able to manage a budget and hire and supervise staff. Texas has dedicated state staff resources that are essential Iowa effectively addresses a common shortcoming to ensuring that its FMS providers can support among self-direction programs. Nearly all self- participants appropriately. The state operates an direction programs are population-specific—that is, “all qualified providers” FMS system with a three- there is a self-direction option for older adults and pronged approach to ensure that providers meet people with physical disabilities (both populations standards. All new FMS providers are required are often included in the same program), another to take a two-day new-provider training course for people with intellectual and developmental and pass a competency test. Providers are also disabilities, and yet another for people with required to attend quarterly and annual training traumatic brain injuries. While this approach that addresses program changes and systemic allows states to have increased control over their issues arising from complaints. programs and to easily fit them into Medicaid 1915(c) HCBS waivers, it can simultaneously leave Robust Participant and Stakeholder Involvement out populations that would benefit from self- In general, participant involvement in program direction and limit what services are available for and policy decisions is often lacking in self- each population. Iowa has worked to maximize direction programs. The statewide Texas access and choice for participants by Council on Consumer Direction (TCCD), an • Developing a single self-direction option that influential stakeholder advisory committee serves nearly all populations, established through Texas Government Code,15 • Using budget authority to maximize provides sound input on all aspects of the state’s participant choice, and self-direction options. Two examples of this influence include TCCD’s role in supporting the • Developing a strong support network based development of the new STAR Kids program, around the FMS provider. recommending topics for periodic FMS provider Developing One Self-Direction Option to Serve training, and providing feedback on CDS training Many Populations and outreach materials. The TCCD is required to report any recommendations to the Health The Consumer Choices Option (CCO) is Iowa’s and Human Services executive commissioner self-direction program, available to six of the and submit an annual report to the legislature state’s seven LTSS populations (children with of policy recommendations made to the behavioral health needs is the exception). Rather executive commissioner. Annual reports keep than establishing a one-size-fits-all program, Iowa the participant voice in front of state lawmakers. uses a flexible approach based on person-centered 15 For more information about the Texas Government Code, see Texas Government Code 531.012 available at http://www.statutes.legis. state.tx.us/Docs/GV/htm/GV.531.htm#531.012 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 7 INNOVATIVE AND PROMISING PRACTICES principles. This approach allows participants drive him or her to the grocery store or a medical and program planners to build service plans appointment because public transportation is based on the unique needs of the individual scarce or nonexistent. Such a flexible approach can participant rather than bounding those plans also enhance efficiency by encouraging participants by some notion of what a particular population to use local community resources—such as health needs. For example, many programs for people clubs or personal trainers to work on personal with developmental and intellectual disabilities health activities—rather than hiring direct care allow for services that enhance employment workers. opportunities, yet very few programs for older Another aspect of this flexibility is that Iowa allows adults offer these services. In the Iowa model, participants to self-direct as many or as few services service planners need not worry about whether as they wish. If a participant wishes to use a budget certain services are available to a particular only to purchase goods and services but is happy population; rather, they can focus on the goals to have an agency manage his or her personal care and preferences of the individual, so that an older staff, then that arrangement is possible. Even with adult who wants to get back into the work force this high level of personal choice, Iowa has been can build that into his or her program plan.16 able to maintain budget neutrality required in all Medicaid waiver programs. Using Budget Authority to Maximize Participant Choice Iowa also has a separate self-direction program that predates CCO; this separate program only CCO is a budget and employer authority program allows participants to hire direct care workers that allows participants to hire and manage and does not offer the option to purchase goods their own workers, including setting pay rates, and services. While Iowa is working to transition schedules, and tasks, and purchasing goods and participants in this separate program to the services. Participants also may save up funds CCO program, there has been some resistance over the course of a year to purchase a good or from participants. Program transitions can be service that would support the person’s goals but stressful, and program changes of any kind need that option is not available through the Medicaid to be implemented slowly and with considerable program. For example, savings from reduced communication with stakeholders. employee hourly wages can be used to purchase assistive devices, laundry, cooking, or handyman or A Program Cornerstone: Developing a Strong cleaning services, or to make home modifications Support Network around the FMS Provider to help consumers live more independently. Underpinning this flexible arrangement is a This budget flexibility is not uncommon in self- network of independent support brokers and an direction programs, but it is an essential element FMS provider that plays a large role in supporting of Iowa’s cross-population approach because both participants and support brokers. Currently, participants’ needs can vary widely. Advocates in Iowa uses a state credit union, Veridian Credit Iowa supported a budget authority model because Union, as its sole FMS provider. This unique services are often hard to find in rural areas— arrangement is due to requirements in Iowa state and Iowa has many such areas. A highly flexible statute, which specifies that FMS providers be a approach allows participants to develop services statewide financial institution that is insured by the creatively where formal services may not exist. An National Credit Union Administration or the Federal example might be a participant paying a family Deposit Insurance Corporation. While relying member, if permitted by the state, or a friend to on independent support brokers is somewhat 16 Enrollees in the Iowa CCO program maintain eligibility as long they are eligible to receive home- and community-based waiver services. 8 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES controversial in self-direction circles, Veridian consistent information about both programs and and its FMS subsidiary, Veridian Fiscal Solutions individual participants goes to each member of (VFS), leads the charge in ensuring the quality of the self-direction team. these services. In addition to all the required FMS employer functions, VFS also provides the state- Iowa Consumer Choices Option approved training for independent support brokers Toolkit: and distributes regular, quarterly updates to both support brokers and participants. VFS maintains a CCO Web Page self-direction website to help participants manage CCO Brochure their services. In its more traditional FMS role, Informed Consent and Risk Agreement Veridian plays an important part by making sure that all payments, whether for personal care or for CCO Handbook for Consumers, Caregivers, and Advocates goods and services, follow the participant’s self- direction budget and program rules. Veridian is also CCO Manual for Case Managers the first to see if participants are getting the care Support Broker Training developed by Public they need, by monitoring the hours of care that are Partnerships, LLC and conducted by Veridian being billed by the participant. VFS works closely Financial Solutions with the state to identify and address any program Examples of Provider Training Programs or billing issues that may affect the provision of self- directed services. WISCONSIN: PUTTING THE PERSON AT THE These tasks support broker training,17 regular CENTER program updates to program stakeholders, and quality assurance—all universal needs in self- direction programs. Who carries them out, however, can vary and be designed to meet the needs and culture of the particular state. Iowa’s Person-centeredness—that is, keeping the approach to Medicaid services in general has participants’ needs and goals at the center of been to outsource as much as possible, leaving services—is an essential component of self-directed a small state staff whose role is primarily to LTSS. Wisconsin’s IRIS (Include, Respect, I Self- monitor program contractors rather than operate Direct) program has succeeded remarkably well at the program directly. Iowa’s approach vests focusing on the participant’s needs and goals and, considerable responsibility in the FMS provider. through several innovative elements, has become The logic behind this approach is twofold. First, one of the country’s strongest programs. Wisconsin FMS providers are most apt to have current developed the IRIS program in 2008 so that contact information on participants and their participants would have a choice of LTSS as the direct care workers, given the importance to state was rolling out its Family Care (managed care) all parties that timesheets and paychecks are model. Now available almost statewide, IRIS serves received in a timely fashion. Second, given the approximately 16,000 people, of whom roughly importance to FMS providers of keeping abreast 21 percent are older adults, across all disabilities. of statutory, regulatory, and policy changes, they The program strives to help eligible persons stay in are often best equipped to track, understand, and the community and avoid entering a nursing home disseminate program updates. Using FMS as this or other institution. IRIS has grown organically type of resource helps ensure that accurate and and is strongly supported by the people it serves. 17 Included in the toolkit are publicly available training materials for support brokers, but users need to register to gain access. Because this is a training program, the materials cannot be readily browsed. TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 9 INNOVATIVE AND PROMISING PRACTICES Even as program staff moves to clarify and different as each participant. States, however, have formalize the rules for this far-from-small program, to operate fairly; each citizen should be treated that process is being done with a clear mandate equitably. Because individuals have different to maintain IRIS’ person-centered culture. It notions of a need versus a want, maintaining maintains that culture through three methods: fairness within self-direction programs can be a • Maximizing choice from the beginning of the challenge. Rather than rely on lists of rules that participant’s experience, include services always covered or never covered, the Wisconsin IRIS program uses what is referred • Using shared decision making instead of to as “kitchen table” decision making. This means bureaucratic rules to resolve difficult issues, and that when deciding the most cost-effective ways to • Offering strong support that enables the meet a participant’s desired outcome or need, the participant to be in charge. program’s approach is to support the participant being in charge of the decision. This is done Maximizing Choice by bringing the team together—including the Wisconsin developed IRIS as an alternative for participant and family members—around the participants as the state rolled out its MLTSS kitchen table in the participant’s home to decide program.18 This is unusual in that self-direction the best way to help the participant achieve his usually occurs within an MLTSS offering, rather or her goals. This method allows all perspectives than as an alternative to it. Wisconsin’s approach to be discussed openly, and it supports the is also unusual because it informs participants of participant’s role, which is to be in charge of the monthly budget estimate available before they his or her IRIS service plan. Also, this approach make the choice between managed care and self- allows decision making to be transparent to the direction. Specifically, Wisconsin uses its Aging and participant and the family members. Disability Resource Center/No Wrong Door system, which exists independently of both IRIS and Offering Strong Supports MLTSS providers, to provide enrollment counseling The IRIS program provides every participant to participants as they enter the LTSS Medicaid with an IRIS consultant who is employed by an system. It is with this information in hand that IRIS consultant agency. These consultants help participants are offered the choice of self-directing the participant create a self-directed service plan, or working with a managed care organization. As and they remain available to the participant previously noted, the manner in which participants following development of the service plan to are offered the choice of self-direction appears to help ensure that it is working as needed and that have a significant impact on whether they choose the participant remains in charge. Devolving this option. Wisconsin’s approach of having a decision making to the participant and his or her conflict-free party offer the choice, along with a team requires that all members of that team be clear statement of the budget estimate, may have a proficient in their roles. For many years, there significant impact on the IRIS program’s growth. was only one provider for consultant agency services in the state. A few years ago, however, Supporting Participant Decision-Making Instead the state realized that a program that emphasizes of Bureaucratic Rules choice should offer a choice of consultant agency Person-centeredness recognizes that each providers. As a result, Wisconsin now has six individual has unique needs and goals, and the consultant agencies and four fiscal employer agent pieces necessary to achieve those goals will be as (FEA) providers. Offering participants a choice of 18 While the Family Care MLTSS program offers some opportunities for self-direction, IRIS is specifically designed as a self-directed services program. 10 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES consultant and FEA providers necessitated that design can be found in the AARP No Wrong Wisconsin increase its oversight and monitoring Door: Supporting Community Living for Veterans of these agencies. Program leaders point out that promising practice paper published in November opening the door for choice has led to competition 2017.20 among the agencies, resulting in improved Because VD-HCBS is available at roughly only quality. Agencies strive to provide the best service one-third of the VAMCs in the United States, the possible so that individuals choose them and not a VD-HCBS Tampa, Florida, program description competitor. This history of helping the participant will focus on the startup phase of the self- be in charge of his or her plan, strong state direction program to assist VAMCs and No Wrong oversight, and recent history of increasing choice Door (NWD) agencies that do not currently offer has helped make Wisconsin’s IRIS program a program. Three aspects of that process will be among the strongest in the country. examined: • Striking while the iron is hot: being ready Wisconsin IRIS Toolkit: when the opportunity arises; IRIS Website • Developing and trusting the partnership: IRIS Participant Handbook letting each party do what they do best; and IRIS Brochure • Proving value: being able to show benefit in IRIS Participant Responsibilities order to bolster leadership support. IRIS Policy Manual Striking While the Iron Is Hot IRIS Work Instructions Because each VAMC and NWD agency is IRIS Service Definitions different, every VD-HCBS program has a unique story of how it was established. In each case, however, when the opportunity to start the FLORIDA: GET GOING AND GET GROWING program arose, both partners were willing and STRATEGY able to take advantage of that opportunity. In James A. Haley Veterans Hospital and Senior Tampa, Florida, the leadership at the James A. Connection Center Inc. Tampa, Florida Haley Veterans Hospital learned about VD-HCBS early in the 2008 national rollout and decided it would be a better way to serve veterans who needed LTSS. Through VD-HCBS, veterans would have greater choice and control over their LTSS and be able to continue to live in their home and Veteran-Directed Home- and Community-Based community. The coordinator for the VD-HCBS Services (VD-HCBS) offers veterans who need program at the hospital seized this opportunity LTSS the opportunity to self-direct their services. It operates as a partnership between a local and moved quickly to solidify a relationship with Veterans Affairs Medical Center (VAMC) and the local Aging and Disability Resource Center/ its neighboring aging and disability network NWD agency, the Senior Connection Center, Inc. agency.19 Details of the unique VD-HCBS program (SCC) of Tampa. Leadership at SCC saw promise with the program and moved quickly to develop 19 Aging and disability network agencies that serve veterans can include Area Agencies on Aging, Centers for Independent Living, Aging and Disability Resource Centers that are sometimes called No Wrong Door (NWD) agencies, and State Units on Aging. 20 Christina Neill Bowen, Wendy Fox-Grage, Kali Thomas, and James Rudolph, No Wrong Door: Supporting Community Living for Veterans (Washington, DC: AARP Public Policy Institute, November 2017). TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 11 INNOVATIVE AND PROMISING PRACTICES the necessary materials to serve veterans. With program, to be discussed and resolved in a this rapid response, the James A. Haley Veterans collective manner. Hospital became one of the first VAMCs in the country to offer the VD-HCBS program. Proving Value All new VD-HCBS programs must demonstrate Developing and Trusting the Partnership that they are achieving intended goals, doing it It is important to understand that the VAMC well, and operating at a reasonable cost. As the and NWD agency each bring knowledge and VD-HCBS program in Tampa expanded, VAMC resources to VD-HCBS that the other does not leadership became concerned that the program have. VAMCs have veterans who need LTSS and was too expensive. The program’s expense, some level of funding to buy those services; NWD however, can be attributed to it serving a high- agencies have an understanding of community needs population; it may actually save money resources in general and self-directed services because it helps limit costly nursing home in particular. SCC had extensive knowledge of admissions. Even though VAMC had proposed the self-direction because it had already been serving program, VD-HCBS program leadership worked people who were self-directing through a Florida with SCC partners to provide evidence of the Medicaid program. As a result, SCC was readily value of sustaining and growing the program. able to modify its procedures to meet the needs This was accomplished by demonstrating the of the VD-HCBS program. The toolkit shown following three factors: here includes several SCC VD-HCBS program documents that could be used by other states and • Veterans liked the program. localities as a guide in developing, operating, and – Veterans have reiterated their satisfaction enhancing a VD-HCBS program. with VD-HCBS services, as reported in satisfaction surveys. Toolkit materials from Tampa Florida VD-HCBS Toolkit SCC include examples of these surveys. • Veterans were getting good care. Senior Connection Center, Inc. documents: – While Veterans Affairs staff continues to monitor veterans through routine Program Operating Materials Veterans Affairs clinic visits, NWD agency Program Satisfaction Materials staff also monitors veterans’ care through regular required visits with VD-HCBS participants in their home and even more Beyond the procedural level, building trust frequent phone contact. (The independent was an integral part of forging the partnership consultant contact requirements can be between the Haley Veterans Hospital and SCC. found in the VD-HCBS toolkit SCC program It was essential to establish trust at both the operating materials.) In their regular organizational and the personal level. Building meetings, VAMC and SCC staff can share trust involved sharing a common vision and this enhanced information about veterans’ purpose, coming to agreement on the meaning care. The VAMC can also learn a great deal of giving veterans an opportunity to self-direct about the care veterans are receiving from their services, and having open and regular the spending reports generated by the FMS communication during program development, provider. The Veterans Affairs and the implementation, and expansion. Ongoing NWD agency can, therefore, work together dialogue has allowed issues, whether pertaining to paint a complete picture of the care each to individual veterans or to operation of the veteran is receiving. 12 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES • The program has been cost-effective. – A recent report prepared by The VD-HCBS Local Sustainability Lewin Group for the Veterans Health Guidance Administration showed that VD-HCBS VD-HCBS Local Sustainability recipients experienced utilization declines Guidance in both inpatient and nursing home lengths of stay.21 Other smaller studies In 2014, at the request of the Veterans have shown savings in acute care costs, Administration, the National Resource Center such as decreased emergency room use for Participant-Directed Services published a and hospital admissions. No Wrong Door: guide on how to make a case for sustaining Supporting Community Living for Veterans the ongoing importance of the VD-HCBS addresses this issue. The VD-HCBS Local program. The report addresses several ways Sustainability Guidance report (see textbox) that sites can create value in maintaining looks at cost and other evidence that local a program as well as the ways in which its programs can use to demonstrate the importance can be conveyed to organizational positive impact of their programs. leadership. 21 The Lewin Group, Inc., “VD-HCBS & H/HHA Demographics and Utilization,” report created for the Veterans Health Administration, Office of Geriatrics and Extended Care, Washington, DC, October 2017. TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 13 INNOVATIVE AND PROMISING PRACTICES Conclusion Evidence shows that self-direction is an The innovative practices and strategies effective way to provide LTSS. Although all highlighted in this paper—program states have LTSS program options that offer development and growth, expansion in an self-directed services, how these services MLTSS environment, effective coordination, are structured and administered, as well as participant and stakeholder engagement, and the number of people served, varies widely tailored program options—are helping to across states. Many stakeholders want more expand opportunities for individuals in four programs developed to increase opportunities state programs to self-direct their care. This for individuals to self-direct. Expanded capacity, information, along with toolkit resources and improved service coordination, and training contact information for experts in the four states programs for individuals and providers are also can help to encourage and guide other states, with critical. Although some states have increased the ultimate goal of increasing opportunities for opportunities for consumers to self-direct their individuals to self-direct. LTSS, perceived barriers hinder many states to take their programs to the next level. Contacts The following experts contributed to this paper and can be contacted for support and guidance: FLORIDA TEXAS Elizabeth Provenzano Heatherly Chenet Geriatrics and Extended Care Lead Policy Specialist, Consumer Directed Services James A. Haley Veterans’ Hospital Medicaid/CHIP, Policy and Program Development (813) 972-2000 | (888) 716-7787 Texas Health and Human Services Elizabeth.Provenzano@va.gov (512) 487-3395 Heatherly.Chenet@hhsc.state.tx.us Kevin Gilds Veteran Services Contract Coordinator WISCONSIN Senior Connections Center, Inc. John O’Keefe (813) 676-5611 Program & Policy Analyst-ADV Kevin.Gilds@sccmail.org Office of IRIS Management Wisconsin Department of Health Services IOWA (608) 267-7505 Brian Wines John.OKeefe@dhs.wisconsin.gov HCBS Program Manager Iowa Medicaid Enterprise (515) 256-4661 BWines@dhs.state.ia.us 14 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES Long-Term Services and Supports Scorecard Innovative and Promising Practices Appendix: National Inventory of Self-Directed Programs for the 2017 State Long-Term Services and Supports Scorecard INNOVATIVE AND PROMISING PRACTICES Publicly Funded Self-Directed Long-Term Services and Supports Programs in the United States Final Report, December 6, 2016 INTRODUCTION with support from the AARP Foundation, The The National Resource Center for Participant- Commonwealth Fund, and The SCAN Foundation. Directed Services (NRCPDS) completed a National Inventory (NI) of self-directed programs in the METHODS United States on behalf of the 2017 State Long-Term Data were collected from April to September Services and Supports Scorecard. This inventory 2016. Sources of data included state Medicaid builds on the NRCPDS’ 2011 and 2013 NIs to reflect waiver information, information from financial the impact of changes in federal law, regulation, management services (FMS) providers, and and policy designed to promote growth of self- telephone interviews with SD-LTSS program directed long-term support services (SD-LTSS), as administrators. well as the expanding number of state Medicaid programs contracting with managed care entities FINDINGS to administer their LTSS services. The following The number of SD-LTSS programs nationally sections describe the state of SD-LTSS and changes remains stable: The 2016 NRCPDS Inventory or trends from earlier NRCPDS NI findings on SD- is reporting 253 SD-LTSS programs nationally LTSS. The 2016 NI was conducted to support the (Table 1). The 2016 NI counted all “programs” development of the 2017 State Long-Term Services operating under a single Medicaid 1915© waiver and Supports Scorecard, which was produced and all Veteran-Directed Home- and Community- TABLE 1 National Inventory of State Self-Directed Program Comparisons 2011–2016 2011 STATE LTSS Blank SCORECARD DATA 2013 NRCPDS 2016 NRCPDS SOURCE1 INVENTORY INVENTORY Total Program Count 233 261 253 TOTAL SD PARTICIPANT ENROLLMENT BY STATE Alabama 89 79 260 Alaska 3,688 4,601 3,802 Arizona* 2,140 1,466 4,000 Arkansas 4,928 4,465 3,661 California* 480,000 450,374 540,190 Colorado 19,550 2,660 4,355 Connecticut 2,429 4,809 3,650 Delaware* 35 1,042 1,407 District of Columbia 1 2 33 Florida* 1,984 4,880 3,196 Georgia 2,849 2,008 3,769 Hawaii* 2,271 2,424 2,959 Idaho 1,178 640 2,170 Illinois* 8,327 5,689 **35,434 Indiana 905 762 375 16 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES 2011 STATE LTSS Blank SCORECARD DATA 2013 NRCPDS 2016 NRCPDS SOURCE1 INVENTORY INVENTORY Iowa* 3,095 2,193 8,430 Kansas* 3,416 14,073 10,333 Kentucky 4,332 3,228 10,676 Louisiana* 2,235 3,833 4,875 Maine 930 1,292 1,076 Maryland 7,175 273 583 Massachusetts* 19,460 13,254 41,590 Michigan* 9,355 60,939 72,192 Minnesota* 5,736 18,653 **17,878 Mississippi 3,750 600 3,457 Missouri 15,270 25,921 29,205 Montana 4,832 1,956 3,399 Nebraska 2,346 4,729 3,550 Nevada 1,238 436 572 New Hampshire 1,770 1,508 1,444 New Jersey* 2,587 7,264 15,415 New Mexico* 4,400 4,700 2,535 New York* 10,252 10,372 30,759 North Carolina* 70 1,426 1,856 North Dakota 432 701 1,239 Ohio 1,082 962 1,433 Oklahoma 953 865 1,235 Oregon 23,512 18,340 30,012 Pennsylvania* 19,157 22,958 20,018 Rhode Island* 1,642 1,961 2,102 South Carolina 1,786 2,323 3,442 South Dakota 1,036 925 98 Tennessee* 1,186 2,046 2,852 Texas* 7,964 11,744 24,677 Utah 2,875 1,682 **2,072 Vermont 4,310 5,956 5,074 Virginia 7,809 10,885 19,582 Washington 22,585 44,150 48,540 West Virginia 690 1,236 2,250 Wisconsin* 9,563 20,784 24,258 Wyoming 506 1,149 929 TOTAL SD Enrollment 739,711 811,218 1,058,889 1 M. Murphy, I. Selkow, and K. Mahoney, Financial Management Services in Participant Direction Programs (Long Beach, CA: The SCAN Foundation, 2011), http://www.thescanfoundation.org/sites/default/files/TSF_CLASS_TA_No_10_Financial_Management_ Services_FINAL.pdf. * Managed-Long-Term Services and Supports states. **Missing one or more program enrollment counts and using 2013 enrollment counts where possible. TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 17 INNOVATIVE AND PROMISING PRACTICES Based Services (VD-HCBS) programs operating enrollments increased in 16 MLTSS states and in a state as a single program (previous NRCPDS decreased in the other 5 states. Overall, MLTSS NIs generally counted these programs separately). states increased SD-LTSS program enrollment on Despite this change, the 2016 program count is an average by over 80 percent. Of the 31 non-MLTSS increase of 20 programs from the 2011 inventory states, 21 states increased SD-LTSS enrollment and used in the 2011 edition of the Scorecard, which the other 10 states decreased it. Overall SD-LTSS estimated the number of SD-LTSS programs to program enrollment in the non-MLTSS states be 233, and a slight drop from the 2013 NI, which increased 110 percent between 2013 and 2016. estimated the total number of programs to be More SD-LTSS programs are being offered 261 (Table 1). The more conservative counting of statewide: Of the 253 programs, 229 (91 percent) programs in 2016 explains the drop in the total reported on whether the SD-LTSS program number of programs nationally from 2013. was offered statewide. Of those responding, The number of participants enrolled 189 programs (75 percent of all programs) in SD-LTSS has grown considerably: reported operating statewide. In 2013 only The 2016 NRCPDS Inventory is reporting 116 programs (44 percent of all programs) 1,058,899 participants enrolled in SD-LTSS reported operating statewide. programs nationally (Table 1). This is an increase Medicaid remains the largest funding source of 319,188 from 2011 and approximately 247,681 for SD-LTSS: This is not a surprising finding— from what NRCPDS reported in December 2013 from the earliest effort to inventory SD-LTSS by for the 2014 edition of the Scorecard. California Doty and Flanagan in 2002,23 Medicaid has been SD-LTSS enrollments (n = 540,190) still account the primary funding source. Funding sources were for just over half (51 percent) of the national total. identified for 240 (95 percent) of the 253 programs California represented 56 percent in 2013 and in 2016 and are reported in Table 2. Medicaid 65 percent in the 2011 NI. sources accounted for 78 percent of SD-LTSS The Growth in managed long-term services program funding in 2016. and supports (MLTSS) does not appear to SD-LTSS programs serve people of all ages have much impact on SD-LTSS enrollments: and all types of disability: The 2016 Inventory MLTSS has grown since the 2011 NRCPDS has information on populations served by SD- Inventory. According to the August 2016 National LTSS from 208 programs (82 percent of all Association of States United for Aging and programs). As in previous iterations of the NI, Disabilities (NASUAD) State Medicaid Integration almost half (n = 93 or 37 percent) of these state Tracker, 21 states (Arizona, California, Delaware, SD-LTSS programs serve multiple populations. Florida, Hawaii, Iowa, Illinois, Kansas, Louisiana, Table 3 reports on the number of programs that Massachusetts, Michigan, Minnesota, North serve different populations. Carolina, New Jersey, New Mexico, New York, State Implementation of Fair Labor Standards Pennsylvania, Rhode Island, Tennessee, Texas, Act (FLSA) Home Care Rule: The revised FLSA and Wisconsin) are currently implementing or Home Care Rule went into effect in 2015 and its full operating MLTSS.22 Table 1 notes these states with impact on SD-LTSS may not be fully realized as of an asterisk. Comparisons between 2013 and 2016 this writing. Several states reported that responding state enrollments show that SD-LTSS program to the Home Care Rule has been difficult and 22NASUAD, State Medicaid Integration Tracker, accessed September 25, 2016, http://www.nasuad.org/initiatives/tracking-state- activity/state-medicaid-integration-tracker. 23 P. Doty and S. Flanagan, Highlights: Inventory of Consumer-Directed Support Programs (Washington, DC: Office of the Assistant Secretary for Planning and Evaluation, US Department of Health and Human Services, 2002), accessed September 28, 2016, https://aspe.hhs.gov/pdf-report/highlights-inventory-consumer-directed-support-programs. 18 TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION INNOVATIVE AND PROMISING PRACTICES TABLE 2 Programs by Funding Source 2016 PERCENTAGE OF REPORTING NUMBER OF PROGRAMS FUNDING SOURCE PROGRAMS (n = 240) Medicaid State Plan 17 7% Medicaid 1115 Demonstration Waiver 13 5% Medicaid 1915(b) Waiver 3 1% Medicaid 1915(c) Waiver 145 60% Medicaid 1915(i) State Plan Option 2 1% Medicaid 1915(j) State Plan Option 5 2% Medicaid 1915(k) State Plan Option 4 2% Veterans’ Administration 31 13% State General Revenue 7 3% Private Pay 0 0% Other Funding Mechanisms 13 5% time consuming. A couple of states reported an required to recruit additional workers and might unwillingness to incur the increased expenditures have trouble finding workers with the right amount for home- and community-based LTSS necessary of billable time available to work the necessary to pay overtime and are avoiding minimizing such hours. Another possible implication of FLSA is that cost increases by limiting the number of weekly self-directing participants might also have difficulty hours for which independent providers (self- finding additional workers who they think can do directed workers) may bill Medicaid (or other public as good a job for them as would the workers they programs). One possible impact of the new FLSA would choose to employ if those workers were not rule may be that self-directed participants may be subject to the billable hours cap. TABLE 3 Population Served by SD-LTSS Programs PERCENTAGE OF REPORTING NUMBER OF PROGRAMS POPULATION SERVED PROGRAMS (n = 208) Adults with Behavioral Health Issues 4 2% Adults with Intellectual Disabilities/Developmental Disabilities (ID/DD) 88 42% Adults with Physical Disabilities 70 34% Children 69 33% Elders 58 28% Other (e.g., Traumatic Brain Injury, Autism, HIV) 13 6% Veterans 31 15% TAKING IT TO THE NEXT LEVEL: USING INNOVATIVE STRATEGIES TO EXPAND OPTIONS FOR SELF-DIRECTION 19 THIS PAGE INTENTIONALLY LEFT BLANK THIS PAGE INTENTIONALLY LEFT BLANK INNOVATIVE AND PROMISING PRACTICES www.longtermscorecard.org