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Dialysis Transportation: The Intersection of Transportation and Healthcare (2019)

Chapter: Chapter 4 - Initiatives on the Healthcare Side

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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
×
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Suggested Citation:"Chapter 4 - Initiatives on the Healthcare Side." National Academies of Sciences, Engineering, and Medicine. 2019. Dialysis Transportation: The Intersection of Transportation and Healthcare. Washington, DC: The National Academies Press. doi: 10.17226/25385.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Introduction The healthcare industry is changing, with an evolving shift from the traditional volume-based, fee-for-service model to one where government payments are linked to the performance of healthcare providers. This includes an increased focus on healthcare quality, following many years’ experience with cumulative efforts to address quality. The 2010 Affordable Care Act (ACA) accelerated changes to healthcare. Rather than relying on the more conventional approach—where each procedure, exam and prescription has a price—the ACA moves Medicare towards a value- based model, with payments tied to the quality and ef�iciency of care provided by healthcare organizations and professionals. The ACA is also pursuing speci�ic “alternative payment models” that make healthcare providers accountable for outcomes (28). The evolving changes include an emphasis on preventive care—on taking responsibility for patients’ health not only when they are in the hospital but also while they are in the community. And transportation is increasingly recognized for its important role in healthcare. Chronic Kidney Disease The focus on healthcare quality includes attention to chronic diseases, including kidney disease. Among the pilots that the federal Centers for Medicare and Medicaid Services (CMS) is funding through its Center for Medicare and Medicaid Innovation (CMMI) are Accountable Care Organizations. These are designed to give healthcare providers incentives to be accountable for a patient population and invest in coordinated care and high quality and ef�icient service delivery. One such Accountable Care pilot is the Comprehensive ESRD Care model for Medicare bene�iciaries on dialysis. The pilot "comprehensively addresses the full spectrum of Medicare ESRD bene�iciary healthcare needs by creating �inancial incentives for dialysis facilities, nephrologists, other Medicare providers, and ESRD stakeholders to coordinate care for these bene�iciaries." Chapter 4 Initiatives on the Healthcare Side One of the country’s largest healthcare systems reports that formerly the best scenario for healthcare systems and providers was “having lots of sick patients in the hospital” but that “has been turned on its head. Now the ideal is to have lots of healthy people in their homes” (29). Chapter 4—Initiatives on the Healthcare Side 4.1

This includes the coordination of care "across the full range of clinical and non- clinical support services and across providers and settings" (30). Inclusion of "non-clinical support services" is signi�icant, as it recognizes the healthcare industry's acknowledgment of the social determinants of health. These are de�ined as “the structural determinants and conditions in which people are born, grow, live, work and age” (31). Support services are important in the goal of improving healthcare because poor health is in�luenced by unmet social needs—such as inadequate and unsafe housing, insuf�icient and unhealthy food options, unreliable transportation, and so forth. Social Determinants of Health (31). Transportation—A Social Determinant of Health At a basic level, transportation can be seen as a necessary step for ongoing healthcare, particularly for those with chronic diseases such as ESRD. Without 4.2 Dialysis Transportation: The Intersection of Transportation and Healthcare reliable and timely transportation, patients with chronic diseases may miss or Social Determinants of Health

delay appointments, which may lead to poorer management of the disease and thus poorer health outcomes (32). This chapter describes a number of projects, pilots, and services initiated on the healthcare side that inform this report on dialysis transportation. Some of the initiatives relate directly to ESRD and to the disease's transportation requirements while other initiatives relate only indirectly. Together, they help illustrate efforts that address the growing need for dialysis transportation. The chapter also identi�ies several healthcare programs addressing other patient populations that have incorporated transportation as a covered bene�it so patients have access to care. These programs serve as contrasts to healthcare programs for ESRD patients on dialysis that do not include the transportation necessary for ongoing healthcare, such as Medicare. An important caveat: this chapter does not attempt to present a comprehensive listing of efforts under way that may impact dialysis transportation, but rather it describes a range of initiatives captured by the research project and identi�ied by the panel overseeing the project. Direct Initiatives CMMI Pilot—Comprehensive ESRD Care Model The CMMI pilot focusing on Medicare patients with ESRD, introduced at the start of this chapter, was launched in 2015. Known as the Comprehensive ESRD Care (CEC) model, the pilot strives to improve outcomes for Medicare patients with ESRD and at the same time test an alternative payment structure, with a goal of reducing per-capita healthcare spending. Participants in the CEC model are known as ESRD seamless care organizations (ESCOs) and include providers and suppliers of services for ESRD patients: dialysis facilities, nephrologists, and other Medicare providers. In the �irst year of the pilot, 14 ESCOs participated, representing 216 dialysis facilities in 12 states (33). Included in the model is the opportunity to provide what are called waivers for extra services beyond what traditional Medicare covers. Non-emergency transportation for patients is speci�ically included among allowable waivers. Use of Waivers for Transportation A 2017 evaluation of the model looked at the use of waivers, among many aspects of the CEC model assessed. According to the evaluation, while The research project‘s survey of nephrology social workers found many patients have problems with transportation, leading to missed and shortened treatments. Particularly for patients reliant on public transportation, a large majority of social workers (87%) reported “Yes, transportation problems negatively impact patients’ dialysis treatment.” Chapter 4—Initiatives on the Healthcare Side 4.3

participants varied in their reported use or interest in waivers, transportation was one of the most frequently used. Staff at ESCOs in rural locations found the waiver for transportation particularly helpful, reporting limited public transportation in their areas (33). Reportedly, however, the transportation waivers could be dif�icult to use. In particular, the transportation waiver was limited to $500 per member per year, and this was cited as a challenge by ESCO staff. ($500 will cover only a small portion of the annual transportation cost for the more than 300 trips needed for a dialysis patient at $20–40/trip.) Notably, while not all of the participating ESCOs used the transportation waiver, all ESCOs identi�ied “lack of transportation as a frequent cause of missed dialysis treatments, hospitalizations and associated unnecessary expenses” (p. 25, 33). Despite this reported lack of transportation, the evaluation of the CEC model found lower Medicare spending and improvements on some of the use and quality measures. These resulted primarily from a reduction in total hospitalizations and readmissions (33). “Increase Access to Care”—A Strategy to Transform and Improve Healthcare Delivery for ESRD Patients "Increase access to care" is one of three main strategies used by the ESCO participants to transform and improve healthcare for the ESRD patients, according to the evaluation report. And the participants identi�ied “improved coordination of transportation” as one of the approaches to improve access (p. 29, 33). Transportation is literally a primary means for improving access to care, and one might surmise that increased support and resources for transportation to dialysis would enhance the access to care strategy and further reduce total hospitalizations and readmissions. This would lead to not only lower Medicare spending but also to healthcare improvements for dialysis patients. Healthcare Providers Partner with Transportation Network Companies Hospitals and other healthcare providers and organizations have started to partner with Uber, Lyft, and other ride-hailing companies—often referred to as transportation network companies or TNCs—for non-emergency transportation service. Healthcare providers are using TNCs for patient access to medical appointments, such as trips for primary care and trips home after a hospital stay discharge. TNC service for patients with chronic diseases is also being 4.4 Dialysis Transportation: The Intersection of Transportation and Healthcare

provided, but it is not yet clear the extent to which trips for ongoing dialysis treatment are provided. TNCs have recognized the large market for non-emergency medical trips, and their role in serving medical trips including those with chronic diseases will likely grow. Arrangements with TNCs Healthcare providers have varying arrangements with TNCs. Some hospitals have a direct partnership with a TNC. For example, the hospital may facilitate access to the TNC service by a link on the hospital’s website to the TNC app. For those patients without a smartphone, trips might be scheduled through designated staff at the hospital such as patient advocates. Medicare Advantage Plans (Medicare coverage is provided through Original Medicare or through a Medicare Advantage Plan, such as an HMO or PPO, under contract to Medicare) may partner with TNCs to improve their members’ access to healthcare appointments. A California- based plan began using Lyft for patient transportation in 2016. Patients contact the healthcare provider, which in turn uses a broker to manage its non-emergency transportation. Lyft is among the transportation providers in the broker's network (34). While TNCs have been providing medical trips for several years through various arrangements, the two prominent ones announced more formal programs to serve the healthcare industry in early 2018. Uber, for example, launched Uber Health, a dashboard that allows healthcare providers to book rides for their patients' transportation. Lyft announced a partnership with an online records service that allows doctors to arrange rides for their patients' medical appointments (36). Experience with TNCs for Medical Trips Available information shows that healthcare providers report improved patient access with the TNC collaborations, as well as patient satisfaction with the service. According to several healthcare organizations, use of TNCs has reduced patients' waiting time for trips to and from the medical facility and lowered the cost per trip. TNCs are also used to help reduce no shows and missed medical appointments (37). Experience with TNCs for medical trips has also shown some challenges. TNCs do not generally have drivers with accessible vehicles, so patients using Denver Health Medical Center in Denver, CO, helps patients with transportation (e.g., free bus passes, taxi vouchers). The hospital has added Lyft to its transportation services, with hospital staff booking rides on Lyft for patients needing transportation. Typically these are trips for patients being discharged from the hospital or needing access to and from outpatient clinical appointments. Experience shows that Lyft is more effective for trips needed on a real-time basis and when patients are ready for their trip. The collaboration began in late 2017, with the first 3 months providing more than 200 rides, at an average cost of $7.40 per ride. Funding for the trips has come from the Denver Health Foundation (35). Chapter 4—Initiatives on the Healthcare Side 4.5

mobility devices who cannot transfer to a sedan may not be able to use TNC service. TNC trips for those with cognitive disabilities may not be appropriate, and state credentialing requirements for Medicaid NEMT service may limit the use of typical TNC drivers (38). One of the country’s largest Medicaid brokers has found that only certain patients should be booked rides with a TNC. The broker indicated that patients with behavioral health concerns and elderly patients can become confused by changing drivers and changing cars that arrive for a pick up, and such patients require a ”continuity of care.” Accordingly, the broker has determined to book TNC trips largely for same-day appointments, which reportedly account for about 5% to 7% of total trips provided annually (37). A recent University of Pennsylvania study evaluated the use of TNC services to reduce patient no-shows and missed medical appointments. The study included 796 Medicaid bene�iciaries treated at one of the university’s medical practices. The researchers found that offering a free Lyft ride to Medicaid patients for a scheduled medical appointment did not reduce the rate of missed appointments. According to the study, the no-show rate for medical appointments for those offered the free TNC ride and for those not offered a ride was virtually the same: 36.5% vs. 36.7%. While the study outcome may not have been expected, the researchers conclude that the �indings can inform future research such as exploring different transportation delivery methods or targeting populations with greater transportation needs. Future efforts should also look at other risk factors for missed medical appointments—not just transportation but other social and economic factors that may also be at play. There are multiple social determinants that may have an additive effect (39). Using TNCs for Dialysis Patients A hospital in Detroit, Michigan, has piloted a transportation service for a selected group of 25 dialysis patients to support their trips to medical care needed before dialysis treatment begins (40). Patients starting both hemodialysis and peritoneal dialysis need several trips for minor surgery to create “dialysis access.” For hemodialysis, the most common type of dialysis, this involves creating a portal under the skin allowing access to the patient’s bloodstream. Recognizing that some of its patients have problems with transportation, the hospital initiated the pilot with SPLT, a software platform (and Detroit-based startup) for trip scheduling, and with Lyft to provide the trips. The pilot also included a local non-emergency transportation company with lift-equipped vehicles, recognizing that Lyft did not offer accessible vehicles. The non- emergency transportation company was reportedly needed for one patient’s transportation. 4.6 Dialysis Transportation: The Intersection of Transportation and Healthcare

The hospital social workers booked the trips for the patients using SPLT, which in turn arranged the trips. Previously, dialysis access patients were responsible for their own transportation. Patient feedback was positive, and the hospital is considering possible plans to expand the transportation pilot for dialysis patients undergoing the three- times-per-week treatment. Other transportation pilots may be planned as well, and different transportation solutions will be considered depending on the target patient population. For example, some patients need more assistance than is available with typical TNC service. The hospital has provided transportation in other ways before the pilot, with the availability of bus tickets and cab vouchers for patient trips in certain cases. According to the hospital, the December 2016 ruling with revisions to the federal Anti-Kickback Statute has made it easier for the hospital to move forward with transportation. The hospital understands transportation can be a challenge for patients—data on missed and no-showed appointments, as well as direct patient input, con�irm this. The hospital also realizes, however, that transportation inequity is just one factor in the social determinants of health that in�luence people’s health (41). Indirect Initiatives Various initiatives relate indirectly to the need for dialysis transportation, such as increasing the use of home dialysis and efforts under way to address the causes of chronic kidney disease to slow the incidence of ESRD. Increasing Adoption of Home Dialysis Patients who dialyze at home have a signi�icantly reduced need for transportation compared with those treated at a dialysis facility. After the training period for home dialysis, the patients need only two to six one-way trips per month for dialysis-related appointments compared with 24 monthly one-way trips for those who travel to and from a dialysis facility. Recent national data show an increase in adoption of home dialysis since 2008, yet it is still not common: less than 10% of Dialysis Location Transportation Needs One-Way Trips Per Month Annualized One-Way Trips Dialysis Facility: Hemodialysis 24 trips: Assumes 6 trips/week and 4 weeks/month. 312 Patient’s Home: Peritoneal Dialysis or Hemodialysis During training: 40 trips. (Assumes 2 trips each weekday for 4 weeks of training.) After training: 2-6 trips/month for periodic appointments at dialysis facility or with nephrologist. 62-106 Chapter 4—Initiatives on the Healthcare Side 4.7

patients dialyze at home, while as many as 25% could potentially do so (12). Achieving this goal, however, may be somewhat more challenging in rural areas compared with urban regions, as fewer rural dialysis facilities offer alternatives to in-center hemodialysis (42). Notably, increasing the use of home dialysis is a stated CMS goal. Attaining that goal requires attention to Medicare's payment system for treatment as well as efforts to increase predialysis education so individuals with CKD understand the options for dialysis, including advantages associated with home dialysis (12, 43). Better acknowledgment of, and attention to, factors in�luencing patients’ choice of dialysis modality may also increase the adoption of home dialysis (44). A recent study analyzed patient preferences, recognizing that several sociodemographic characteristics are related to dialysis choice: older age and minority status are associated with a lower preference for home dialysis. This study highlights advantages that home dialysis may offer, including �lexibility, quality of life, longer life expectancy, and the ability to stay employed. The authors suggest that additional nursing support and a longer training period may encourage greater use of home dialysis, both PD and HD. Patients have expressed concerns about safety, support, and isolation when considering home dialysis. The study also suggests that efforts should explore ways to support older patients in adopting home dialysis and should try to achieve equitable access to home dialysis across all socioeconomic levels (43). Patient support, including family support—particularly at the start of dialysis—as well as de�ined qualities of empathetic care, is emphasized in another study. Such improved emotional support may increase the uptake of home dialysis (45). "Transition Units" to Encourage Home Dialysis Adoption Transition units are a new approach to treating patients with ESRD who are initiating dialysis. Transition units speci�ically aim to improve education about modality choices as well as address patients' emotional needs. With this approach, all patients starting dialysis are placed in a transitional start unit for 4 weeks. Patients begin with a gentler and more optimal hemodialysis routine and then receive intense education about treatment modality options (46). At the start, the transition unit staff addresses the patient's fears and uncertainties about dialysis and learns about the patient's lifestyle and medical goals. After the patient is more stable medically and emotionally, unit staff can focus on education about treatment choices, including home dialysis. The medical literature identi�ies several reasons why the adoption of home dialysis 4.8 Dialysis Transportation: The Intersection of Transportation and Healthcare

Indian Health Service Division of Diabetes Treatment and Prevention: Special Diabetes Program for Indians is low. Among the reasons is a lack of adequate education for ESRD patients about renal replacement treatment options. The �irst week of the 4 weeks in the transition unit helps the patient feel better, physically and emotionally, and the next 3 weeks focus on teaching the patient about treatment options, including what the choices mean for lifestyle changes. By the fourth and last week, education efforts speci�ically include transportation issues related to in-center versus home dialysis. At the end of the fourth week, the patient, patient’s family, and medical team come to a decision about the best option to pursue, given the patient’s lifestyle and medical goals—whether this is dialysis at a center or at home. The overall approach is intended to help the patient make a well-informed decision about the best option for treating ESRD with comprehensive education at the start. With better education, the approach also strives to increase the adoption of home dialysis, a treatment option that many nephrologists believe can be a preferred option for patients. Home dialysis empowers patients to care for themselves, which may improve their quality of life and allow patients to continue working or return to work (46). Addressing Diabetes—A Major Cause of ESRD Diabetes is a leading cause of ESRD. Treating and preventing diabetes can address chronic kidney disease and the incidence of ESRD, and various programs and efforts are under way with those objectives. One such program targets American Indian and Alaska Native (AI/AN) people—the Special Diabetes Program for Indians—and began more than 20 years ago. Another program is recent and targets the much larger population group of Medicare bene�iciaries—the Medicare Diabetes Prevention Program (MDPP). Special Diabetes Program for Indians Diabetes affects Native Americans, which include American Indians and Alaskan Natives, at almost twice the rate of the general U.S. population. Recognizing this, the federal government implemented the Special Diabetes Program for Indians (SDPI) in 1997, allocating $150 million annually through 2017. The program has funded more than 300 Indian Health Services (IHS) Tribal and Urban Indian health programs at the community level to prevent and treat diabetes (47, 48). Chapter 4—Initiatives on the Healthcare Side 4.9

Communities developed and implemented local diabetes treatment and prevention programs that acknowledged their own community concerns and needs, with training and support provided by the Indian Health Services Division of Diabetes (49). Local programs incorporated various elements—diabetes clinical teams, diabetes patient registries, nutrition services and access to registered dieticians, access to culturally tailored diabetes education materials, weight management, and community-based physical activity programs for children and youth—among others (48). It was a coordinated approach, designed to confront diabetes on multiple fronts: medication adherence, transportation for clinic visits (italics added), and extensive health education (50). The SDPI has seen success, in particular its impact on ESRD. The SDPI's 2014 report to Congress stated that the incidence rates of ESRD for Native Americans decreased 43% from 2000 to 2011, a rate greater than for any other racial group in the country (48). Since 2011, the decrease has continued. According to the assessment of ESRD incidence by race and ethnicity in the recent federal report on renal disease, "The decline has been greatest, over 2-fold, among American Indians/Alaska Natives" (2). The approaches taken by the SDPI may be a useful model for diabetes management for other population groups, according to an IHS report. This report cited the documented success of the multidisciplinary team approach, coordinated clinical care and education, community outreach, and the tracking of outcome data, which resulted in a substantial decrease in ESRD incidence since 1996 (47). Medicare Diabetes Prevention Program The objectives of the Medicare Diabetes Prevention Program (MDPP) are to prevent the beginning of Type 2 diabetes among Medicare bene�iciaries with pre-diabetes, improve health, and reduce spending. It is estimated that one in three adults in the country (more than 84 million people) have pre-diabetes (51). The program is built on the Diabetes Prevention Program model that was tested through a CMMI Health Care Innovation Award to the YMCA, which provided a diabetes prevention program to Medicare bene�iciaries with participating YMCAs nationwide. The program focused on losing weight and increasing physical activity (52). Starting in April 2018, Medicare bene�iciaries will have access to the MDPP— which is to provide "evidence-based diabetes prevention services." This will 4.10 Dialysis Transportation: The Intersection of Transportation and Healthcare

Excerpt from Medicare Diabetes Prevention Program (MDPP) Expanded Model, “MDPP 101 Orientation Webinar,” A. Zina, MSPH, CMMI, CMS, December 13, 2017. include, at a minimum, 16 intensive core sessions of an approved curriculum over 6 months. The sessions are provided in community and healthcare settings by coaches, such as trained community health workers or health professionals. After completing the core sessions, less intensive monthly follow-up meetings help ensure that participants maintain healthy behaviors. The primary goal for participants is at least a 5% weight loss. See https://innovation.cms.gov/initiatives/medicare-diabetes-prevention- program for information about the MDPP expanded model. The program is reportedly the �irst disease prevention program that meets ACA requirements to gain Medicare coverage (53). Success with this new program in preventing diabetes can serve a role in helping slow and prevent the incidence of ESRD. Healthcare Programs Providing Transportation Generally speaking, the U.S. healthcare system has been reluctant to include transportation services as a covered bene�it that is routinely provided to Chapter 4—Initiatives on the Healthcare Side 4.11

patients who face barriers to accessing care. Nevertheless, a few examples stand out to illustrate ways that transportation can be incorporated into care delivery. Federally Qualified Health Centers The single largest source of primary care services for low-income and underserved individuals in the country is provided through Federally Quali�ied Health Centers (FQHCs), authorized under Section 330 of the Public Health Service Act (Pub. L. 94-63) (54). Originally created as part of President Lyndon Johnson’s War on Poverty, these centers now serve as integrated primary care sites for more than 27 million people in over 10,400 rural and urban communities (55). Over two-thirds (71%) of health center patients have family incomes at or below 100% of the federal poverty level (FPL) and 9 out of 10 are low income (at or below 200% of the FPL) (56). As a result of coverage expansions associated with the ACA, more of the health center patients now have some form of health insurance than ever before. Nearly half (49%) are covered by Medicaid, about 17% are privately insured, and 9% are on Medicare. About 24% of health center patients are uninsured (57). Health centers must offer a sliding scale fee to uninsured patients. Payment depends on the patient’s income, with the scale sliding to zero co-payment if the patient cannot pay any of the fee. The Health Resources and Services Administration (HRSA), one of the public health agencies within the U.S. Department of Health and Human Services, provides grants to these FQHCs to support care for uninsured and underserved patients, to supplement clinical programs with preventive supports and community health programs, and to address barriers to full engagement stemming from conditions that arise because of poverty and other social determinants of health. Support for Patient Transportation—An “Enabling” Service The health center movement is built on the premise that health and community are intertwined and inexorably linked. In addition to authorizing funding for clinical services, Section 330 of the Public Health Service Act also recognizes that health centers will offer what are known as “wrap-around” or “enabling” services, including outreach, transportation (italics added) and interpretation services. These services break down barriers to care while ensuring care is delivered in culturally and linguistically appropriate settings, and are therefore vital for ensuring access to primary care and preventive 4.12 Dialysis Transportation: The Intersection of Transportation and Healthcare

Courtesy of the National PACE Association services. On average, these grants represent about 18% of total health center revenues. FQHCs can use their HRSA federal grants to support the enabling services, customized to the particular needs of their patient populations. For example, in some communities, interpreter services are a priority need; in other communities, transportation services are more critical to patient access. Funding and Staff for Patient Transportation According to data reported by the health centers through a national reporting system, transportation was funded at more than $46 million in 2016. While only a small percentage of total funding was for the enabling services (3%), the funds allow the health centers to purchase vans or rent vehicles, contract with services to transport their patients, or otherwise support their transportation- related needs. In that same year, transportation was staffed by 665 full-time- equivalent health center personnel—out of more than 20,000 health center personnel—supporting patients’ transportation needs as vehicle drivers, schedulers, and other related positions (58). The resources provided for patient transportation through the health center program recognize the important role of transportation in healthcare. And, in a literal sense, the resources ensure access to healthcare for members of the program’s target population with transportation barriers. Program of All-Inclusive Care for the Elderly (PACE) Some healthcare initiatives target specialized populations, such as those with acute, chronic, or long-term care needs. The Program of All-Inclusive Care for the Elderly (PACE) is designed to enable individuals with multiple complex chronic conditions to stay in community- based care, thereby avoiding costly and unwanted nursing home stays. The �irst PACE-type program began in San Francisco’s Chinatown neighborhood in the early 1970s. Called “On Lok,” which in Cantonese means “peaceful, happy abode,” the program was a senior center addressing the needs of elderly Chinese residents with a linguistically and culturally tailored approach (See https://www.onlok.org). Chapter 4—Initiatives on the Healthcare Side 4.13

Courtesy of the National PACE Association Within about a decade, the Medicare and Medicaid programs took note of On Lok’s success in managing chronically ill residents in community-based settings. With funding from the Robert Wood Johnson Foundation, a demonstration program was initiated to replicate and evaluate the intervention in other sites, building on multidisciplinary team management and more �lexible spending to address the social, cultural, clinical, and community needs of patients. PACE—A Medicare Provider PACE was authorized as a permanent Medicare provider in 1997. The program now serves over 40,000 elderly individuals in more than 120 programs in 31 states (59). PACE providers offer services to quali�ied enrollees in full-risk contracts, meaning that the PACE program receives a capitated payment from the Medicaid or Medicare programs (or sometimes from a private source as well) for all services associated with the patient’s care. This includes all services commonly covered by Medicare and Medicaid, plus a range of supportive services that traditionally fall outside of both programs, such as adult- day programs, alternative or complementary medicine, and transportation (italics added) or related costs. PACE services can be provided in patients’ homes, in adult day centers, and at health care sites. Likewise, patient socialization to avoid isolation is a key principle; thus, having accessible group activities for socialization purposes is a valued service that can require transportation. The key to receiving transportation rests with the interdisciplinary care team (IDT), which provides individualized care management designed to maintain health and functioning and reduce costly and avoidable health care utilization (such as inpatient and emergency department visits). If the IDT determines that transportation is indicated in a patient’s care plan, those services must be provided by the PACE program, and transportation staff must be apprised of 4.14 Dialysis Transportation: The Intersection of Transportation and Healthcare

any relevant changes to the patient’s condition. In this way, transportation staff become part of the PACE care team (60). According to data from the National PACE Association, PACE programs provide an average of 16 trips per month per participant. These are trips designed speci�ically for each individual senior participant—with trips meeting not just the medical but also the social, emotional, and other needs of the senior. See PACE Facts and Trends at https://www.npaonline.org/policy-and- advocacy/pace-facts-and-trends-0. Medicaid as a Payer of Social Interventions Several states are beginning to consider ways to incorporate targeted social interventions into Medicaid coverage, recognizing that addressing social needs can be an essential element in individual-level health and population-level health improvement. The rationale for this approach is articulated in a recent guidance report published by the Milbank Memorial Fund: “For coverage of low-income people, in particular, this means that spending money on medical services alone—without a coordinated, effective strategy for addressing a range of social issues—can result in inef�icient use of health care dollars and limited opportunities to work with Medicaid clients to improve their health” (61). States have several approaches to adding services or otherwise changing their Medicaid programs, including through state plan amendments and Medicaid waivers. • State Plan Amendments: A Medicaid state plan is the agreement between a state and the federal government describing how that state administers its Medicaid program. The federal government’s approval provides assurances that the federal government will provide matching funds for those activities in the agreed-on state plan. For states with state plans that already include broad authority to cover certain types of services or bene�its, a state plan amendment becomes a relatively straightforward vehicle for expanding services addressing social determinants of health. For example, if a state already offers targeted case management as an optional bene�it, it can specify certain types of services to be paid by Medicaid that will help bene�iciaries get the health care they need. In some cases, this will include transportation services. The coverage of transportation in this case comes through the coverage of an optional service that is already covered in many state plans. The amendment, then, could speci�ically mention transportation services as Chapter 4—Initiatives on the Healthcare Side 4.15

one of the case management-related covered services. Likewise, states often include optional preventive, rehabilitative, and habilitative care, which could lead to coverage of transportation where access to those services was a facilitator to that type of care. • Medicaid Waivers: The waivers provide states with greater �lexibility to shape Medicaid bene�its and services to particular needs of their patient populations. Essentially, these waivers allow states to “waive” a key provision of the program, for example, the requirement for “statewideness” which means states are to offer the same bene�its and services to people in all parts of the state. The two most common waivers related to inclusion of social services, which may include transportation beyond what traditional Medicaid requires, are Section 1115 demonstration waivers and home and community based services waivers (under Sections 1915(c) and (i) of the Social Security Act). Every state has taken advantage of the Section 1115 demonstration waiver option to expand or otherwise alter their Medicaid programs. Through Section 1115, states have used waivers to provide a different bene�it plan to just some subset of their Medicaid population, to limit services in terms of the type of provider allowed to provide that service for it to be covered/matched by the federal government, or to add new groups to their state program. For example, Oregon and Colorado have both used the Section 1115 demonstration waiver to create coordinating organizations that include community health workers and other non-traditional services to facilitate access to care for low-income bene�iciaries. Oregon’s Coordinated Care Organizations and Colorado’s Regional Care Collaborative Organizations (RCCOs) essentially oversee Medicaid managed care plans in the state and include social services when they are deemed to facilitate or support overall health. In Colorado’s case, RCCOs help bene�iciaries get to doctors’ appointments and connect people to social services. California, Maine, Michigan, and New York are all working under waiver authority to support some services related to non-clinical care, with the expectation that such support would lead to higher quality and lower costs over time. Such services allowed through the waivers process often include transportation (62). 4.16 Dialysis Transportation: The Intersection of Transportation and Healthcare

Next: Chapter 5 - Demand and Costs for Dialysis Transportation: A Data Tool »
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Medical literature has identified transportation as a factor in missed and shortened dialysis treatments, which leads to negative health outcomes. These adverse outcomes include, among others, increased hospitalizations because patients do not receive their scheduled treatments. For public transportation agencies, dialysis transportation has become a critical concern as increasing numbers of individuals with end stage renal disease turn to their community’s public transit service for their six trips each week for dialysis.

TCRP Research Report 203: Dialysis Transportation: The Intersection of Transportation and Healthcare responds to major concerns of public transportation agencies about the rising demand and costs to provide kidney dialysis trips and about experiences showing these trips require service more specialized than public transportation is designed to provide.

The report documents the complicated relationship of two different industries—public transportation and healthcare, each with its own perspective and requirements—to highlight problems, identify strategies addressing concerns, and suggest options that may be more appropriate for dialysis transportation.

The following additional materials accompany the report:

• A Supplemental Report that includes, among other material, the literature review and results of the project’s surveys, as well as an assessment of the comprehensive data provided through the U.S. Renal Data System, which underlies the project’s forecasting tool.

• A forecasting tool, which is the community data tool referred to in the report. The Excel forecasting tool enables communities to estimate (1) current and projected demand for public sector trips to kidney dialysis facilities, (2) current and projected costs for this transportation, and (3) potential decreases in the demand for, and cost of, public sector trips if home dialysis increases.

• Info Brief 1 of 2 and Info Brief 2 of 2 capture the key findings of the research project.

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