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

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Photo courtesy of KFH Group. Introduction Individuals with ESRD who dialyze at a facility face a signi�icant transportation burden with multiple weekly trips required—trips to and from the facility 3 days every week: Monday, Wednesday, Friday or Tuesday, Thursday, Saturday—every month, 12 months a year. Adding to the transportation burden is the often-dif�icult return trip home after treatment: patients are often very tired and feel ill or depleted after dialysis. For patients who drive themselves to the facility, it may not be safe for them to be driving home. For other patients who rely on friends or family or some other transportation mode, the trip may be safer. But for patients who rely on public transportation and other publicly subsidized modes, there is often a wait for the driver and the trip home may be indirect since it is shared with others. This is hard when the patient is feeling unwell and just wants to get home. This chapter describes the types of transportation that dialysis patients use to get to and from their facility. Issues and challenges of that transportation are then described, with data from the research project's surveys as well as information from the project's literature review. The chapter also identi�ies funding that supports transportation for those who do not have private transportation, in particular, funding for public transit agencies and funding through the federal Medicaid program. How Do Patients Get to and From Dialysis? Data from the research project's survey of 262 nephrology social workers show that almost half of dialysis patients (46%) either drive themselves or are driven by family or friends. The survey further indicates that about one-third use public transit's ADA paratransit (30%) and a small percentage use public bus or rail (4%). Chapter 3 Transportation to Dialysis: Modes and Money Chapter 3—Transportation to Dialysis: Modes and Money 3.1

”How Do Your Patients Travel To Your Facility?” Results of Research Project’s Survey of Dialysis Facilities, March 2017 The remaining patients—about 20%—use a mixture of various van providers, including Medicaid non- emergency medical transportation (NEMT), nursing home and assisted living facility vans; U.S. Veterans Affairs (VA) vehicles; "tribal transport"; as well as taxis, ambulances, and volunteer drivers. Reportedly, a few patients walk to their dialysis facilities. These latter transportation modes were identi�ied by survey respondents in the categories of "Other Van Provider” (9%) and "Other” (9%). Data collected for the research project generally correspond to several other studies of dialysis transportation. A survey of dialysis patients in Portland, Oregon, found that just over half of patients drive themselves or are driven by family and friends (54%) with the rest using a range of other modes such as public paratransit, Medicaid NEMT, and other specialized transportation including ambulance and taxi (14). A study for the State of Maryland that surveyed 114 dialysis facilities throughout the state reported that not quite half of patients drive themselves or are driven by family and friends (40%). Half of the patients used public transportation (49%), de�ined to include Medicaid NEMT, with the remaining patients using various van providers (e.g., human service agencies or nursing homes) as well as ambulance and taxi (15). An older study from Fairfax County, Virginia, that surveyed a small sample of patients found a larger proportion using publicly subsidized modes (76%), including ADA paratransit, Medicaid NEMT, and, in particular, a county-funded program serving dialysis trips, as well as taxis and "other" compared with the other studies. The Fairfax County study survey did not include the "driven by family or friends" mode, a mode used by 16% and up to 23% of patients in the other studies cited (16). 3.2 Dialysis Transportation: The Intersection of Transportation and Healthcare

Photo courtesy of KFH Group. Transportation to Dialysis Data from this research project and from the other studies cited collectively indicate that approximately half of dialysis patients either drive themselves or get rides from family or friends. The other half of patients relies on a range of transportation modes, in particular ADA paratransit and Medicaid NEMT, as well as transit agencies’ specialized demand–response services, different subsidized van providers, and other modes that include ambulance and volunteer drivers. The trips provided for this second half of dialysis patients are together considered public sector trips. The very small percentage of patients who use a private taxi are included as public sector trips because they could prefer a free or less expensive mode for their trips. What Are the Transportation Issues and Challenges? Dialysis patients who must travel to their facility for treatment and do not have private transportation encounter problems. This is clear from this research project's surveys as well as from other studies assessing dialysis transportation. There are also problems on the transportation side: the providers face operational issues serving trips for dialysis patients and these in turn can cause problems for the patients. Those problems can impact other riders because the transportation service is shared-ride. Transportation providers may recognize that their issues impact dialysis riders as well as other riders, but they have service and policy constraints. Transportation issues and challenges from different perspectives—patients, dialysis facilities, medical practitioners, and public transportation providers— are highlighted in this chapter. Perspectives of the Patients Unreliability is the primary problem that dialysis patients without private transportation confront with their transportation modes. This is expressed in different ways. Chapter 3—Transportation to Dialysis: Modes and Money 3.3

"Sometimes I have to sit and wait at least an hour and I have to call and say my ride is not here yet, which makes me late getting there, which makes me late getting on the machine, which makes me late getting off the machine. And then ... coming to pick you up, if you're not ready when they get there they will leave you and you’ll have to sit and wait and wait and wait and wait." Quote from a patient as reported in In-Center Hemodialysis Attendance: Patient Perceptions of Risks, Barriers and Recommendations, by K.B. Chenitz and M. Fernando, Hemodialysis International, 2014. According to one patient survey, the more frequent problems included (14): • The vehicle is late in dropping off the patient at dialysis, which then means treatment is shortened. • The vehicle is late picking up the patient after treatment. • The ride is canceled or never shows up, so the patient misses treatment. • Treatment is shortened because the patient is worried about missing the ride home. Unreliability is echoed in another study that researched the most common barriers that patients cited for missing their dialysis treatment. The �irst barrier reported was inadequate or unreliable transportation. (Other barriers included a lack of motivation and that dialysis was not a priority.) This study found that those patients who used the “public transportation van service” reported inconsistent pick-up times and dialysis facility arrival times, long waits for trips, and sometimes missed trips (17). In another patient survey conducted in a predominately rural area, the main problems reported included (18) the following: • Patients wait long times for their ride home after treatment. • Trips to and from the dialysis center are long. Recognizing that transportation to and from dialysis can be problematic, the research project’s survey of patients asked respondents to identify the three most important characteristics for transportation. The �irst two responses address the predominant problems with dialysis transportation as expressed by patients: • Transportation should be on time to treatment. • Transportation should be reliable—"the ride always shows up." • Transportation should be affordable. Even those patients with private transportation see the day-to-day problems of their fellow patients who must rely on publicly subsidized modes. One patient added this comment to the research project’s patient survey: "Very concerned that I will not be able to drive myself in the future and will need transportation. I'm aware of all the problems with transportation companies and drivers. It is an added stress to the patient on dialysis.” 3.4 Dialysis Transportation: The Intersection of Transportation and Healthcare

Results of Research Project’s Survey of 262 Nephrology Social Workers, March 2017 Perspectives of the Dialysis Facilities The unreliability of transportation and resulting stress on patients are also complaints expressed in the research project’s survey of nephrology social workers. Signi�icantly, almost 90% of the surveyed social workers reported that the transportation problems for their patients who rely on public transportation negatively impact the patients’ treatment. As a follow-up, the social workers were asked two questions regarding the impacts of those transportation problems: First, do the transportation issues result in shortened dialysis treatment because your patients arrive late or leave early? Eighty- four percent (84%) of the social workers reported yes. Second, do your patients miss dialysis treatments because public transportation is unreliable, for example, because the van never shows up? Seventy-two percent (72%) of the social workers reported yes. While the social workers reported that it is not the majority of their patients who have such transportation problems, there are health consequences for their patients who are impacted. Medical research con�irms this. The survey also found that transportation issues are a major and frustrating concern for the social workers, detracting from other responsibilities. A comment from one social worker captures this �inding: “It is not uncommon that we spend hours a week dealing with problematic transportation issues, which sometimes seems that our position is more transportation manager than social worker with a Master’s degree.” The Social Workers' Concerns Almost half of the social workers added comments to their survey, emphasizing their central concerns regarding their patients’ transportation: • Patients have long waits for their trip home after treatment. • “Transportation problems have a huge impact on our patients. They often report this to be the number one stressor in coping with ESRD.” Quote from a nephrology social worker responding to the research project’s survey of dialysis facilities, March 2017. Chapter 3—Transportation to Dialysis: Modes and Money 3.5 Medicaid transportation is not reliable.

• Public paratransit has problems: days and hours of service are limited; service area is limited; and dialysis trips on ADA paratransit cannot be prioritized. • Transportation options are limited in rural areas for patients without their own transportation. • Transportation is expensive if not subsidized by the patient’s insurance. Several social workers suggested a preferred approach would be a transportation service dedicated for dialysis patients. As voiced by one social worker: “… [it would be better] if dialysis centers were able to have their own transportation company to transport patients [,] which would alleviate a lot of stress on our teammates and patients.” Medical Perspectives Research in the medical �ield has identi�ied transportation as a factor in missed and shortened dialysis treatments, which then leads to negative outcomes for patients. One study investigated factors related to missed appointments with an assessment of more than 18,000 ESRD patients on hemodialysis and whether those missed appointments posed signi�icant harm to the patients’ health. According to the study’s authors, patients who miss their appointments “place themselves at increased risk for hospitalization or mortality” (19). Regarding factors related to those missed appointments, this study found signi�icant associations between missed treatments and increasing hospitalization with factors related to public transportation (italics added), bad weather, holidays, and other patient factors. Among the barriers to treatment assessed in the study, the researchers clearly state the role of public transportation in missed treatments: "patients with private transportation to dialysis (i.e., self-driven or brought by family member or caregiver) had signi�icantly better attendance and outcomes compared with patients who relied on public transportation (i.e., city bus or transportation van)" (19). Another study explored the frequency of missed and shortened treatments and their impact on mortality and hospitalization. The authors reported that missed and shortened dialysis treatments are universal, but they are disproportionally more frequent in the U.S.–ESRD population and they are more prevalent among minority populations, younger patients age 55 or younger, and patients with treatment on a Tuesday, Thursday, Saturday schedule. Based on their research, the authors found that “The adverse relationship between hospitalization and missed/shortened dialysis treatments is unequivocal.” Moreover, the frequent hospitalization of these patients contributes to rising cost of ESRD care (20). 3.6 Dialysis Transportation: The Intersection of Transportation and Healthcare

Photo courtesy of KFH Group. This study also queried patients about their reasons for skipping or shortening their dialysis treatment. The top reasons included family emergencies, transportation (italics added) or weather issues, feeling “poorly” (20). Two studies assessing travel time to dialysis and impacts on patients were reviewed. The �irst study found that patients traveling more than 60 minutes have a 20% greater risk of death compared with those patients traveling 15 minutes or less (21). The second study compared patients who traveled to a central dialysis center with those patients who traveled to a closer satellite center. The researchers found that shorter travel time and distance to dialysis centers are associated with improved patient outcomes and a higher health-related quality of life (22). Perspectives of Transportation Agencies Public transit agencies and other transportation providers face operational challenges and problems in serving dialysis trips—whether they provide ADA paratransit or other specialized services. The findings from the research project's survey of more than 500 transit agencies echo �indings of other studies in the transportation literature that document concerns and problems with dialysis transportation. These included the increasing demand and costs for the trips as well as operational constraints. Dialysis Trips Virtually half of urban transit agencies responding to the research project’s survey reported that dialysis trips are 10% or more of their total specialized transportation trips. Almost one-fourth of the urban agencies reported even greater proportions of dialysis trips: more than 20% of all their trips. Considering the various types of trips provided by specialized transportation, these survey �indings show a signi�icant proportion of trips dedicated to just one type of medical condition. How Has Demand for Dialysis Trips Impacted Other Trips? Over one-third (35%) of the surveyed transit agencies reported impacts on their service because of the demand for dialysis trips. About half of these agencies reporting impacts are required to meet the demand—and any demand increases—because they provide ADA paratransit, which prohibits trip denials. To meet the demand, the transit agencies have had to add more service and absorb additional operating costs. Chapter 3—Transportation to Dialysis: Modes and Money 3.7

Perhaps most telling, one-fourth of these agencies reporting impacts indicated that during peak periods for dialysis trips, they cannot serve other trip purposes given the dialysis trip demand. What Are Transit Agencies Doing to Meet Dialysis Trip Demand? Half of the transit agencies surveyed (52%) are addressing the demand for dialysis trips with various speci�ic practices and strategies. Three practices were cited most frequently: • Educate dialysis facility staff regarding what we can and cannot do as a transit agency. • Educate our passengers regarding what we can and cannot do to serve their dialysis trips. • Work with dialysis facilities to coordinate patients' treatment times, allowing for grouping of trips for more productive service. The third practice listed—coordinating with dialysis facilities on patients' treatment times—appears more common in rural areas, according to the survey results. Comments to the survey suggested this may be because a rural transit agency serves only a few or just one dialysis center and it is therefore most likely easier to develop working relationships with the staff. A number of agencies elaborated on the speci�ic practice or strategy they use for providing more effective and ef�icient dialysis transportation. Chapter 6 describes these practices or strategies. Dialysis Transportation Is Complicated and Difficult The many comments that transit agency respondents added to their survey revealed that dialysis transportation is more complicated and dif�icult than suggested by some of the survey �indings. The comments made clear that demand for dialysis trips is growing and that the trips require disproportionate attention and resources. The key concerns expressed by transit agencies in both urban and rural communities include • Scheduling problems for the return trips from dialysis, as patients are frequently not ready for their return trip, requiring extra efforts to reschedule and provide the trip. “… the biggest thing that works for us is coordination with the dialysis facility. We all work together as a team to provide transportation.” Quote from a rural transit agency responding to the research project’s survey of transit agencies, April 2017. 3.8 Dialysis Transportation: The Intersection of Transportation and Healthcare

• The extra care and support needed by dialysis patients, particularly after treatment, with several transit agencies stating that such special assistance is beyond what a transit driver can provide. • Changing treatment days and times for patients, which then causes scheduling complications for transit agencies. • The cost for dialysis trips from the additional efforts required as well as lowered productivity because of longer wait times, extra passenger assistance, limited grouping of passenger trips due to passengers' different treatment times and dispersed trip origins, and long travel times to reach dialysis facilities. The long travel times for dialysis trips result from a combination of factors: scheduling practices of dialysis facilities, which may not consider the distance between the locations of the patient's home and the facility; the shared-ride nature of transportation services; and the operating environment. Especially in rural areas, the distance to even the closest dialysis facility may be long. Transportation Funding Providing transportation requires money. A van suitable for transporting passengers costs about $42,000. A small bus, accessible to riders with disabilities, may cost $60,000 to $70,000. Those are among the capital costs for transportation. Operating costs are another matter. A transit agency in a large city may pay upward of $50 to $60 for each hour of transit operation, covering the driver's wages, fuel, maintenance, and supporting costs such as the dispatcher for specialized services. While the cost for an hour of service in a small community may be less, a transit agency must nonetheless �ind the operating funds to continue providing service. Federal Funding The federal government through the Federal Transit Administration (FTA) helps subsidize transit agencies' service with capital and operating grants. The rules of the grants dictate which agencies get which grants and how much, and virtually all grants require the local agency to provide matching funds. However, importantly, federal funding is limited, and larger urban transit agencies receive no assistance for day-to-day operations. • “Dialysis transportation has become a huge issue. The demand is growing but our resources are not.” • “Special care is needed with patients on the return trip due to frail status and bleeding. The … needs of these passengers go beyond what a public transit driver can provide.” • “To serve dialysis trips, we have had to put drivers on the road at 4 a.m., two hours earlier than our previous start time. This places strain on the drivers but also on maintenance and dispatch that now need to be ready to react to issues as early as 3:30 a.m. There is no compensation for this type of operational cost.” Quotes from three transit agencies responding to the research project’s survey of transit agencies, April 2017. Chapter 3—Transportation to Dialysis: Modes and Money 3.9

Funding becomes a struggle particularly as transit agencies see growing demand for their specialized services that support healthcare trips, including those for dialysis. The federal government also supports transportation for medical trips, including for dialysis, through the Centers for Medicare and Medicaid Services (CMS). Federal funding has an important role in supporting transportation for dialysis and is discussed in more detail in a subsequent part of this chapter. State Funding The states also have a role in funding transportation, through state-funded grants for transit available in many states as well as their role as partners with the federal government in funding CMS’s Medicaid program. State funding targeted to transportation for those with kidney disease seems to be rare. Delaware is the one example identi�ied, with its Chronic Renal Disease Program funded entirely with state funds. The program, which began in 1997 and is administered by the Department of Social Services, provides a range of services for Delaware residents with ESRD who meet state-de�ined eligibility criteria. Focused on low-income residents, the program provides �inancial assistance with medications and nutritional supplements, as well as transportation. Speci�ically, the program includes reimbursement for transportation for dialysis and for transplant services or provides tickets to use the state’s public transit service (23). The program also gives any individual in the program eligibility for the state’s ADA paratransit service, regardless of whether he or she meets all the regulatory criteria for ADA paratransit. At the outset, this did not add appreciably to the number of registered ADA paratransit riders. But since then, with growth in population as well as the increasing rates of kidney disease as seen nationwide, the dialysis trips contribute signi�icantly to the increasing demand for paratransit service in Delaware. Local Funding Funding at the local level is also important, particularly in the provision of match funds necessary to leverage federal, and often state, transit grant programs. Many communities also use local funds to provide specialized transportation services for seniors and people with disabilities, and many users of such programs are going to medical appointments, including to dialysis treatment. 3.10 Dialysis Transportation: The Intersection of Transportation and Healthcare

The City of Phoenix funds a number of specialized transportation programs with local funds, and one specialized transportation program is designed speci�ically for dialysis patients. This program, initiated in 1999 for city residents undergoing dialysis treatment and certi�ied as ADA eligible, subsidizes taxi trips to and from the patients’ dialysis facility. More on this program in Chapter 6. Private Funding Private organizations that may provide assistance for dialysis treatment include charities and non-pro�it foundations. Two national organizations focus speci�ically on helping people with kidney disease and kidney failure: the American Kidney Fund and the National Kidney Foundation. Financial assistance from the American Kidney Fund, for example, speci�ically includes transportation among the patient needs that it supports. Generally, however, private funding is limited and does not always support the ongoing, three-times-weekly transportation needs of dialysis patients. This may change with a new ruling from the Of�ice of the Inspector General of the U.S. Department of Health and Human Services, with revisions to the Safe Harbors Under the Anti-Kickback Statute. This ruling, issued in December 2016, allows healthcare providers such as hospitals and clinics and including dialysis centers (but excluding entities that primarily supply healthcare items such as pharmacies) to fund local non-emergency transportation for patients. The ruling also allows healthcare providers to fund shuttle services for patients and others to access medically necessary services and items within speci�ic parameters. The transportation can be free or discounted. Healthcare providers and unrelated businesses may contribute together to provide the transportation (24). The Geisinger Health System, a large healthcare system in central Pennsylvania, provides an example of a medical provider that has taken advantage of the new ruling regarding patient transportation. Geisinger Health System initiated free non-emergency transportation for selected patients in April 2018 with two pilots—one pilot serving an urban community and the other pilot serving a rural area. Geisinger Health System's objective with the pilots is to help address patient no-shows and get patients to their medical appointments, particularly patients living in the rural area. A regional coordinated network of eight transit agencies in Pennsylvania provides the pilots’ patient transportation. One of these—rabbittransit— serves as the lead and provides "one-stop" access to the transportation service. If one of the public transit providers in the network cannot meet the patient’s trip needs, the trip is scheduled to a taxi, transportation network company (TNC), or other private provider. Geisinger plans to monitor and evaluate the Chapter 3—Transportation to Dialysis: Modes and Money 3.11

R2W Pilot in Flint, Michigan The Flint, Michigan, Mass Transportation Authority (MTA) received a grant of $310,040 in FY 2016 for a Rides to Wellness project that provides non- emergency medical transportation, including dialysis trips, using public transit and mobility management. The project builds on the transit agency’s experience providing dialysis trips that have been coordinated through the MTA’s mobility management function. pilots to determine options for longer-term solutions to address their patients' transportation needs (25). Federal Funding for Dialysis Transportation The more signi�icant funding programs supporting dialysis transportation are discussed in detail below, and the mixed relationship between Medicaid and public transit regarding dialysis transportation is also addressed. FTA Funding that Supports Dialysis Transportation FTA funding programs supporting the provision of non-emergency medical transportation—such as dialysis trips—include • Section 5307—Urbanized Area Formula Grants • Section 5310—Enhanced Mobility of Seniors and Individuals with Disabilities Program • Section 5311—Formula Grants for Rural Areas • Transit & Health Access Initiative (formerly Rides to Wellness) The �irst three FTA programs are longstanding grant programs that support urban and rural transit services, with rules de�ining the speci�ic parameters including match requirements. The fourth FTA program listed above—Transit & Health Access Initiative— was introduced in 2015 under its former name, Rides to Wellness (R2W), and speci�ically targets transportation to healthcare. It is a discretionary program, funding pilots that aim to improve the coordination of transportation services for access to non-emergency medical care Transit & Health Access Initiative Program Authorized funding for the program began at $2 million in FY 2016 and increases incrementally each year, topping out at $3.5 million in FY 2019 and FY 2020. Eligible projects under this program are implementation- ready capital and operating projects that enhance public transportation access such as coordination technology; one- call/one-click centers; health and transportation provider service partnerships; and other activities. The demonstration grants are meant to build on previous private or federally funded efforts, and to test promising, replicable public transportation healthcare access solutions. 3.12 Dialysis Transportation: The Intersection of Transportation and Healthcare

The original Transit & Health Access Initiative (R2W) grew out of FTA's desire to increase partnerships between health and transportation providers, recognizing that lack of transportation can be a barrier for individuals to get medical treatment particularly for chronic diseases such as ESRD. The FTA de�ined the goals for the program as • Increase access to care. • Improve health outcomes. • Reduce healthcare costs. Centers for Medicare and Medicaid Services The Centers for Medicare and Medicaid Services (CMS), part of the U.S. Department of Health and Human Services (HHS), manages Medicare and Medicaid. Both are federal healthcare programs—Medicare is an insurance program for elderly and disabled people, and Medicaid is an assistance program for low-income people. Medicare Medicare was created in 1965 to provide health coverage for the nation’s elderly and disabled populations. Most bene�iciaries “age into” Medicare coverage, meaning that they are 65 years of age and meet the work requirements to qualify for Social Security (or they are the spouse of someone who meets the work requirements). Other people enter Medicare because they are under age 65 and qualify for Social Security Disability Insurance. This second group faces a 2-year waiting period for Medicare bene�its once their disability bene�its begin. Since 1972, a third group has quali�ied directly for Medicare with no age restriction or link to Social Security work requirement—these are individuals who have ESRD and people with ALS (formerly known as Lou Gehrig’s disease). Current estimates indicate that less than 1% of Medicare bene�iciaries have ESRD, yet spending on the disease represents approximately 7% of Medicare’s total expenses. Medicare Does Not Pay for Routine Dialysis Transportation Although Medicare is the principal source of payment for ESRD and dialysis services, Medicare does not pay for routine transport of patients to and from dialysis treatment. Medicare does cover medically necessary ambulance transportation for patients who are deemed by their providers to have no other appropriate or adequate transportation alternatives. Ambulance service, however, is an extremely costly alternative for the Medicare program. Chapter 3—Transportation to Dialysis: Modes and Money 3.13

“Most of our patients are on Medicare[,] which does not cover transportation and they cannot afford the private wheelchair van service that can cost up to $40 per pick-up plus $3 per mile.” Quote from a nephrology social worker responding to the research project’s survey of dialysis facilities, March 2017. According to a 2011 report, 75% of dialysis patients have Medicare as primary coverage, and about half of those have Medicaid as secondary insurance. While transportation is provided to those on Medicaid, it is not always provided when Medicaid is the secondary insurance (26). The implications of Medicare’s policy on transportation are clear from the project’s survey �indings. Several rural transit agencies spoke to the dif�iculties for Medicare patients in �inding transportation, as many need accessible service, which is costly. One rural agency reported that it had used FTA New Freedom funding to provide transportation for 10 riders on dialysis but funding changes made continuing that service very dif�icult. Another rural transit agency explained its dilemma with two passengers on Medicare who need trips to the dialysis facility 30 miles away. The transit agency greatly reduced its fare to assist the individuals, but they cannot afford even the agency’s reduced fare of $10 per trip, a rate that is below the operating cost of the trip. A number of social workers responding to the research project’s dialysis facility survey also described �inancial burdens for Medicare patients who have trouble affording the cost for transportation, particularly for accessible service. Several social workers quoted the costs for transportation for their patients who must �ind and pay for transportation for the three-times-per-week treatment because Medicare does not cover their trips. One social worker commented that having transportation added to Medicare would be a wonderful addition for her dialysis patients. It is worth noting that there is apparently abuse of the Medicare exception for ambulance transportation for dialysis patients. At least two comments to the research project’s survey of social workers allude to this, including a social worker at a rural facility. This social worker wrote that “… two patients are using an ambulance service that ‘loosely’ interprets Medicare regulations on [transportation] coverage.” New Legal Ruling Allows Dialysis Facilities to Provide Transportation The misuse of ambulances for non-emergency transportation for dialysis has actually helped open the door for healthcare providers, including dialysis facilities, to fund and provide transportation for their patients, as now allowed by the December 2016 ruling from the HHS Of�ice of the Inspector General, referenced earlier in the chapter. Comments included in the December 2016 ruling said this about dialysis transportation: 3.14 Dialysis Transportation: The Intersection of Transportation and Healthcare

... the safe harbor for local transportation will save federal healthcare dollars for ESRD patients, as “dialysis patients are a population that has been identi�ied as contributing to the increasing costs of non-emergency ambulance transportation and would bene�it from local transportation furnished by providers.” Medicaid Medicaid is an entitlement program funded jointly by the federal and state governments, which covers a broad range of medical services and supports for individuals and families with low incomes. The program is administered as a partnership between the states and CMS. The federal government covers about 57% of total spending on Medicaid, although funding varies by state. States receive a minimum of $0.50 on the dollar for eligible Medicaid expenses. Poorer states receive a higher federal share to encourage participation in the program and enable them to cover needy residents. States also incur administrative expenses associated with operating their Medicaid programs, which the federal government shares, but only at a 50% match. As an entitlement program, federal and state payments associated with Medicaid are not capped and cannot be denied to bene�iciaries if they qualify for the program and require Medicaid-covered services requested by an eligible provider. The 2010 Affordable Care Act (ACA) brought substantial changes to Medicaid, by expanding Medicaid eligibility to citizens and legal residents (in the United States legally for a minimum of 5 years) under age 65 in families with incomes below 133% of the federal poverty level. These individuals made up about half of the country’s uninsured. The Medicaid expansion was challenged in a Supreme Court case, with the Court determining that states could not be required to implement the Medicaid expansion as a condition of continuing to operate their existing Medicaid programs and receiving federal �inancial participation. In effect, this ruling made the expansion of Medicaid optional for each state. As of June 2018, 33 states and the District of Columbia have adopted the Medicaid expansion. Medicaid Transportation Non-emergency medical transportation (NEMT) was not speci�ically included in the original Medicaid legislation. However, provisions in the legislation and the body of case law that has evolved from the legislative language require that each state Medicaid program include provisions for necessary transportation of Medicaid recipients to and from providers of medical services. Chapter 3—Transportation to Dialysis: Modes and Money 3.15

The requirement for transportation was �irst articulated in Medicaid guidance in 1966, stating that access to care and services is determined by “provision of necessary transportation” to suppliers of medical and remedial care. The transportation requirement was then included in rulemaking issued in 1968 and, in 1978, the transportation requirement was of�icially added to Title 42, Chapter IV, Subchapter C, Part 431 of the Social Security Act as §431.53 assurance of transportation. How states meet the federal mandate to assure necessary transportation to these bene�iciaries is determined, in part, by the de�inition of the term “necessary.” According to an advisory group convened in 1998 speci�ically to examine non-emergency transportation issues, this is interpreted as • Transportation provided is to/from a Medicaid covered service. • The least expensive form of transportation available is used and is appropriate for the client. • Transportation is provided to the nearest quali�ied provider. • No other transportation resources are available free of charge. This means that when several modes of transportation are available, states are to use the least costly means of transportation that is appropriate for the particular medical needs of the bene�iciary. This is also in keeping with Medicaid’s status as the “payer of last resort.” These Medicaid regulations governing NEMT have impacts for public transit agencies. Relationship Between Medicaid NEMT and Public Transit’s ADA Paratransit Medicaid NEMT and ADA paratransit have a strained relationship in many communities. ADA paratransit—a specialized service for riders with disabilities—is a federally required service in communities where the transit agency provides traditional �ixed route service. This service is highly prescribed by ADA’s regulations. These regulations specify, among others, that ADA paratransit must meet six service criteria. One of the criteria, for example, de�ines the fare that can be charged for a trip. Another criterion prohibits any prioritization of trips by trip purpose, even for life-sustaining medical trips. In various locations, Medicaid agencies are known to steer their beneficiaries to use ADA paratransit when the bene�iciaries have a disability and live within the transit service area. (Note that individuals with ESRD are virtually always considered disabled for transportation purposes.) This is increasingly a problem where public transit agencies see growing demand from riders with disabilities, a sizable proportion of whom have ESRD 3.16 Dialysis Transportation: The Intersection of Transportation and Healthcare

Public trans Excerpts from Instructions to County Medicaid NEMT Administrators: [Administrators] are expected to consider alternatives, both of transportation resources and provider resources [when ensuring access to medically necessary care]. Possible alternative transportation resources include but are not limited to: portation, either fixed-route or paratransit. • When an [Administrator] asks the recipient if he/she has other means of transportation, eligibility for paratransit is considered as an available resource and can disqualify the recipient for NEMT. If the recipient has been denied eligibility for paratransit services, a copy of the denial should be kept on file. [Administrators] are not required to provide funds for the use of public transportation. Maryland Medical Assistance Program Guide to the Administration of the Transportation Grant Program, Issued June 2014, Department of Health and Mental Hygiene, Medical Care Programs. and are traveling to and from dialysis. Transit agencies cannot deny those trips, as ADA regulations prohibit trip denials. But Medicaid may pay nothing for the trip on ADA paratransit or perhaps Medicaid may pay the fare. This leaves the public transit agencies with the responsibility for both providing the trip and funding the cost for all or virtually all the cost to provide the trip. This problem stems, according to the transit industry, from Medicaid regulations for NEMT or at least the interpretation of the regulations, as well as limited successful attempts over the years to coordinate Medicaid NEMT and ADA paratransit. There is “hesitation among state Medicaid directors” to pursue coordination with public transit since it “has not been a typical partnership in the past,” according to minutes from a listening session with representatives of state departments of transportation sponsored by the federal Coordinating Council on Access and Mobility (CCAM). The speci�ic Medicaid regulations at the heart of the Medicaid NEMT and ADA paratransit relationship are two—that Medicaid NEMT is to use (1) the least expensive form of transportation available and appropriate for the client; and that Medicaid NEMT is to be provided when (2) no other transportation resources are available free of charge. Medicaid Agencies Managing NEMT Medicaid NEMT is managed by brokers in more than three-fourths of the states, plus the District of Columbia (as of 2018). Many of these are private brokers, paid on a capitated basis. In other states, Medicaid NEMT may be managed by public entities— local or regional—acting on behalf of the state Medicaid agency. For private brokers operating under a capitated payment structure, it can be to their advantage to steer trips to the public transit agency’s ADA paratransit program. Paying the ADA fare—which may range up to $5 or $6 depending on the transit agency’s �ixed route fare—for a Medicaid NEMT trip on the transit agency’s ADA paratransit service makes better business sense for the broker than paying a private wheelchair van provider or a taxi company to provide the trip. Chapter 3—Transportation to Dialysis: Modes and Money 3.17

For a public entity managing Medicaid NEMT, the availability of ADA paratransit may be interpreted as a transportation resource that is available free of charge, following Medicaid regulations for NEMT. The State of Maryland, for example, directs its county-based NEMT administrators to consider ADA paratransit as such a resource. This means Medicaid bene�iciaries who are ADA paratransit eligible can be referred to ADA paratransit as an alternative resource—one that is free of charge to the Medicaid program since Maryland does not require the Medicaid program to pay for the ADA trip nor is there any negotiated payment to the transit agency for providing the trip. Medicaid Guidebook in 1998 Suggested a Negotiated Rate for NEMT Trips on ADA Paratransit Interestingly, Medicaid recognized the ADA paratransit/Medicaid NEMT connection in the early years of the ADA, as public transit agencies raised the prospect that Medicaid NEMT trips might be shifted to ADA paratransit. A technical advisory group of state Medicaid transportation mangers published a guidebook for Medicaid NEMT in 1998 that addressed the possible shifting, recognized that ADA paratransit can charge only twice the fare for �ixed route, and suggested that states could negotiate rates with transit agencies for Medicaid NEMT trips on ADA paratransit that are more than the ADA fare. As explained in the Guidebook (27): The ADA’s “requirements have severely strained the �iscal resources of public transportation agencies due to the substantial capital investment and high operating costs of paratransit systems. The limits placed on how much local transportation agencies can charge for their services under ADA regulations is an issue that affects access to public transportation for ADA eligible Medicaid clients. If these limits are determined to apply to trips provided to ADA-eligible Medicaid clients, transportation providers will be less likely to help Medicaid programs develop public transportation alternatives. In recognition of this fact, several regional of�ices of HCFA [CMS’s original name] have sent letters to states informing them that Medicaid can pay transportation providers a negotiated rate based on the cost of providing the service…. One way states can ensure that the �iscal burden of transporting clients is not unfairly placed on ADA-paratransit services is by negotiating rates with the transit agency providing services. The ADA allows agencies to negotiate rates for providing ADA-paratransit services to clients.” 3.18 Dialysis Transportation: The Intersection of Transportation and Healthcare

CMS Ruling in 2008 Implementing the 2005 Deficit Reduction Act Permits Brokers and a Negotiated Rate for NEMT Trips on ADA Paratransit While the Medicaid guidebook is no longer in print, the suggestion that states negotiate rates with public transit agencies for Medicaid NEMT trips on ADA paratransit remains a viable option, as provided through CMS’s 2008 Final Rule implementing Section 6083 of the De�icit Reduction Act of 2005. This ruling allowed states to amend their Medicaid state plans to establish a non- emergency medical transportation brokerage program, and it speci�ically addressed payment for trips on ADA paratransit. Accordingly, a broker is to pay “no more for public paratransit services than the rate charged to other State human service agencies for comparable services.” While this rate will typically not cover the full cost of providing an ADA paratransit trip, it would be more than the rider's fare and more fair to the transit agency. Despite the CMS ruling, such negotiated payment arrangements between Medicaid agencies and public transit agencies are not common. The Challenges of Coordinating Medicaid NEMT and ADA Paratransit Negotiating payment arrangements for Medicaid NEMT trips provided by ADA paratransit requires coordination between Medicaid and public transit. Despite the fact that transportation coordination has been a topic in the transit industry for more than 40 years, there is limited coordination involving Medicaid and ADA paratransit for at least several reasons. Negotiating Payment for Medicaid Trips Shifted to ADA Paratransit A first challenge, as discussed above, is that a number of state Medicaid agencies follow the Medicaid language specifying that Medicaid agencies are to use the least costly and appropriate transportation mode for Medicaid bene�iciaries who need transportation—which may be interpreted as the community’s ADA paratransit service—but do not follow the option of negotiating a rate with the public transit agency that is more than the ADA fare. Particularly for private brokers operating under a capitated payment structure, it is to their advantage to shift trips to the public transit agency’s ADA paratransit program. Common Template for Coordinating Medicaid and ADA Paratransit A second challenge is that states have considerable �lexibility for providing their Medicaid programs (as long as they stay within the federal guidelines). The result is great variation of Medicaid NEMT models across the states and, with limited examples of coordination with public transit, there is no common template that encourages or facilitates a partnership between Medicaid NEMT and public transit. Chapter 3—Transportation to Dialysis: Modes and Money 3.19

There are at least a few examples of state Medicaid agencies that coordinate with public transit. One is from Nevada: the public transit agency in Las Vegas has had an agreement with the Nevada State Medicaid agency that provides for partial reimbursement of Medicaid-eligible trips on the agency’s ADA paratransit service. The per-trip reimbursement is a “calculated cost per ride,” which is more than the fare though not the fully allocated operating cost per trip. ADA Paratransit Regulations A third challenge for the Medicaid/public transit relationship is the ADA and its regulations for paratransit, which make it dif�icult for public transit agencies to routinely provide the higher level of service frequently needed for riders on dialysis. Two of the six mandated service criteria for ADA paratransit are relevant to this challenge: • No trip purpose prioritization: Transit agencies cannot give priority to dialysis trips. This underlies one of the frequent concerns of respondents to the research project’s surveys—that the vehicle cannot wait more than 5 minutes when arriving to pick up a dialysis patient after treatment. A 5-minute waiting time policy has become standard operating practice in the transit industry; after 5 minutes, the driver is to leave and continue on to serve other riders on the manifest. Waiting for longer periods of time jeopardizes adherence to a second mandated service criterion—the requirement for timely service that is included in the ADA paratransit service criterion regarding capacity constraints. • No capacity constraints: A transit agency cannot limit the availability of ADA paratransit service by any of the following: (1) Restrictions on the number of trips an individual will be provided; (2) waiting lists for access to the service; or (3) any operational pattern or practice that signi�icantly limits the availability of service to ADA paratransit eligible persons. Such patterns or practices include, but are not limited to, (A) substantial numbers of signi�icantly untimely pickups for initial or return trips; (B) substantial numbers of trip denials or missed trips; (C) substantial numbers of trips with excessive trip lengths. This mandate requires transit agencies to ensure timely service with trips that are not excessively long. What this means in practice is that the vehicle cannot wait any extra time for dialysis patients—not only because the transit agency cannot prioritize dialysis trips—but also because it must ensure timely service overall to ensure no pattern or practice of late trips. And the mandate also impacts productivity, constraining the ability of a transit agency to schedule group trips to or from a dialysis facility. Schedules must be designed so that trips, served in a shared-ride manner, are not too long. Such operational practices that lower productivity serve to increase the cost per passenger trip. 3.20 Dialysis Transportation: The Intersection of Transportation and Healthcare

What the Research Project’s Survey Results Contribute to the Discussion Findings from the research project’s surveys provide additional insights on the relationship between Medicaid NEMT and public transit, with a number of transit agency respondents to the survey commenting about Medicaid NEMT. One large transit agency reported that once the state brought in a private statewide broker, trip and cost shifting to ADA paratransit accelerated. Another transit agency reported that a managed care program was sending trips to its paratransit program, causing capacity issues during peak periods. Several transit agencies described what they considered to be poor quality Medicaid NEMT service, prompting individuals eligible for both Medicaid NEMT and ADA paratransit to use the transit agencies' ADA service instead. Comments about poor quality Medicaid NEMT service were a frequent category of comments provided by the nephrology social workers in the research project’s survey. Numerous social workers referred to the unreliability of the service, with late trips to the dialysis facility and sometimes no-shows but especially late pickups after treatment. To the extent that their Medicaid-eligible patients are also eligible for ADA paratransit, they may instead shift their medical trips to the transit agency. The social workers do not necessarily understand the relationship between Medicaid NEMT and public transit, but they do understand, and describe through a number of comments, that there are multiple transportation providers and multiple problems. One social worker reported that implementation of a statewide private broker increased transportation problems for her patients at the same time that the transit agency no longer prioritized dialysis trips because of ADA regulations, and she concluded that the result was “now everybody gets the same bad service.” Chapter 3—Transportation to Dialysis: Modes and Money 3.21

Photo courtesy of KFH Group. What Does All This Mean? Individuals with ESRD who travel to and from dialysis treatment and who do not drive themselves or have rides from family or friends often have problems with transportation. Those without private transportation—about half of dialysis patients—rely on public sector modes, including public transit’s specialized services such as ADA paratransit, Medicaid NEMT, vans provided by the VA, nursing homes, assisted living facilities, “tribal transport,” as well as ambulance and volunteer drivers. Patients and Social Workers: “Transportation Is Unreliable and Inadequate” A primary problem with the transportation—based on surveys of patients—is unreliability. Patients complain about late arrivals at their dialysis facility resulting in shortened treatment, late pickups after treatment, and rides that are canceled or never show up so treatment is missed. They also complain about drivers. According to patients’ comments, drivers “treat us like packages”; drivers are “reckless and rude to seniors”; they are “uncaring and unprofessional” and do not realize “we are usually weakened after treatment.” Nephrology social workers responding to the research project’s survey echo unreliability, and they also �ind that transportation is inadequate. The social workers claim that transportation often does not meet their patients’ needs. Among other problems, patients’ trips cannot be prioritized; service days and hours do not cover treatment shift times; and there are limited transportation options in rural areas. Furthermore, the large majority of the social workers (87%) report that the problems with public transportation negatively impact their patients’ treatment. Not only do the problems result in shortened and missed treatments, but the transportation problems are also a major cause of stress for the patients, according to the social workers. Shortened and missed treatments have health consequences for dialysis patients. The medical literature reports that missed and shortened treatments lead to increases in hospitalization. 3.22 Dialysis Transportation: The Intersection of Transportation and Healthcare

Photo courtesy of KFH Group. A small urban transit agency on Maryland’s Eastern Shore had to reduce service frequency on its popular summer route due to funding constraints caused by increasing demand and cost for ADA paratransit. Dialysis trips are 19% of total paratransit trips (FY 2016 data). One medical report goes so far as to state that outcomes are better for patients using private transportation: “… patients with private transportation to dialysis (i.e., self-driven or brought by family member or caregiver) had signi�icantly better attendance [for dialysis treatment] and outcomes compared to patients who relied on public transportation” (19). Transit Agencies: “Dialysis Transportation Is Difficult to Provide” Transportation providers also have problems with dialysis transportation. More than 500 transit agencies responded to the research project’s survey, voicing concerns about • Increasing demand for dialysis trips. • Scheduling problems for return trips from dialysis. Transit agencies report that patients are often not ready for their pre-scheduled trip home, and they must then �ind a way to send a vehicle back later for the trip. (Note that this is the other side of complaints by patients and social workers about late vehicles for the trip home.) • The extra care and assistance required for dialysis patients after treatment, which are beyond what a transit driver can provide. • The cost for dialysis trips, given the additional efforts required for the trips, lowered productivity and increasing numbers of the trips. Directly related to increasing demand and costs for the trips are concerns about funding. Federal grant funds support transit agencies, but such funding is limited. For transit agencies that provide ADA paratransit service, additional funds must somehow be identi�ied to provide the increasing demand for dialysis transportation because ADA regulations prohibit capacity constraints. One transit agency reported: “Under the ADA, we have very limited ways in which we can attempt to work with passengers to manage our [dialysis trip] demand and associated costs. We do not deny trips under the ADA.” Transit agencies in rural areas may have more latitude to address dialysis trip demand when they do not provide ADA paratransit. But they may not be able to meet the demand because of long distances to the closest dialysis facility and limited resources. A comment from a rural transit agency speaks to this: Chapter 3—Transportation to Dialysis: Modes and Money 3.23

“There is a great need for [dialysis trips] in our county. We have been contacted on several occasions and cannot help out because the operating cost is too much for us to drive out of town every other day.” Compounding the transit agencies’ problems—at least for some agencies—is the fact that Medicaid trips, including dialysis trips, are shifting to the transit agencies’ ADA paratransit programs. As explained by one transit agency: “… we had a coordinated system [but] Medicaid trips have been removed and more and more people are using ADA paratransit to go to dialysis appointments because trips provided by HMO providers are problematic with long wait times and unreliable service…. This trip dumping puts the burden on the community rather than the HMOs [that should be providing the transportation].” A new legal ruling—revisions to the federal Safe Harbors Under the Anti- Kickback Statute—may bring a new resource into the business of dialysis transportation: dialysis facilities. This would ful�ill wishes expressed by respondents in the research project’s three surveys, particularly by the social workers. 3.24 Dialysis Transportation: The Intersection of Transportation and Healthcare