Exploring Access to Independent Living Services for People With Disabilities Through a Transportation Network Analysis

Abstract

Centers for Independent Living (CILs) are nonresidential, nonprofit agencies that provide independent living services to people with disabilities across the nation. The services CILs provide are invaluable to people with disabilities living independently in the community. Accessing CIL services can be challenging for people with disabilities, particularly for individuals in rural areas. A geographic analysis called a transportation network analysis is one method for assessing access to CIL services. We draw on the distribution of CILs across the country and in two rural states (Montana and Arkansas) to assess levels of geographic access using travel distance along national and local road networks. Incorporating data from the American Community Survey allowed us to estimate the number of people with disabilities living within certain distance thresholds from CILs. We saw increased access in urban areas where there is a higher concentration of CILs, suggesting that people with disabilities in rural areas have limited access to CIL services. We explore how partnering with Area Agencies on Aging has the potential to expand access to services for people with disabilities in rural areas, highlighting the utility of geographic analysis in social service provision.

Centers for Independent Living (CILs) are not-for-profit, nonresidential organizations that work to support individuals with disabilities to live independently in the community (National Council on Independent Living, 2020). CILs promote independent living by providing information and referral services to housing and social support resources; advising on benefits enrollment; helping with home modification, transportation, and independent living skills training; and community-level disability advocacy. These services have positive impacts on housing, employment, and quality-of-life outcomes (O’Day et al., 2004). However, although CILs provide beneficial services to people with disabilities, access to these services is not universal. Innes et al. (2000) found that there is limited access to direct CIL services in rural areas and that rural people with disabilities remain an underserved population. Populations in rural areas, on average, experience higher rates of disability across all age groups (von Reichert et al., 2014) and age into disability approximately 10 years earlier than their urban counterparts (R. Sage et al., 2019). Advocacy organizations like the Association of Programs for Rural Independent Living (APRIL) have been working to better serve rural people with disabilities, but barriers remain.

Transportation, for both CIL consumers and CIL staff, has consistently emerged as a barrier to accessing services for people with disabilities (Field et al., 2007). Inadequate routes, scheduling problems, broken transit equipment (lifts and ramps), attitudinal issues with drivers, and inaccessible routes to bus stops and bus stations are reported barriers to using both fixed route and paratransit services (Bezyak et al., 2017). In rural areas, these barriers are often compounded by limited availability of public transportation systems (McDaniels et al., 2018) and by the high costs and limited transportation services of Medicaid’s Non-Emergency Medical Transportation (NEMT) and state-specific Medicaid waiver programs (Friedman & Rizzolo, 2016). The use of a geographic analysis called transportation network analysis may shed new light on this persistent problem and provide new tools for tackling the barriers to providing independent living services to rural communities.

As the science and technology of geographic analysis has advanced, experts from a wide range of disciplines are increasingly interested in transportation network analysis. For example, these analyses are used by private companies to determine the optimal locations for building new stores and by community planners to determine public transportation routes that can best serve the local population. More recently, health researchers have been using transportation network analysis to study geographic access to health resources such as grocery stores (Yeager & Gatrell, 2014) and primary care facilities throughout the United States (Guagliardo, 2004). This research has been particularly valuable for understanding the geographic barriers rural communities face in accessing health services. A systematic review of literature exploring the relationship between distance to care and health outcomes found that increased distance (or travel time) was associated with poorer health outcomes (Kelly et al., 2016). In addition, McDaniels et al. (2018) found that people with disabilities in rural areas are at an additional disadvantage with limited public transportation options (operated in and on aging infrastructure), geographic distance, and unpredictable and often extreme weather significantly affecting people’s ability to access services affecting health and quality of life.

Although research investigating access to health resources in rural communities does exist, there has been little exploration of access to other types of social services, like CILs. In this article, we report the results of a transportation network analysis we conducted to investigate geographic accessibility to CIL services throughout the United States and within two states with significant rural populations, Montana and Arkansas. We analyze access to services based on travel distance to CIL offices, estimate the potential size of the underserved population, and explore how network analysis is a tool that can be used to better understand the impact of cross-organizational partnerships and to develop strategies to better serve people with disabilities in rural communities.

Method

We conducted an initial analysis at the national level involving states in the contiguous United States. Hawaii and Alaska were not included in the national analysis because both are geographic outliers with limited and disjointed road networks and highly localized transportation infrastructure. We ran the analysis using Calliper’s Transportation Network Analysis software TransCAD 7. This tool uses points of origin (in this analysis, CIL office locations) and a road network to create travel bands at defined distances. We identified CIL locations using the Independent Living Research Utilization’s (ILRU) directory of CILs and were able to map 643 office locations, including both main and branch offices. We selected primary and secondary roads (interstates, state highways, and other major roadways) from Caliper’s national street file for the road network. For the nationwide analysis, the maximum travel band distance on major roads was set at 50 miles. Data on local roads could not be used in the national-level analysis due to computational complexity. To approximate distance traveled on local roads, we built in a 15-mile buffer around the 50-mile network bands of major roads.

To validate the network analysis parameters and gather initial reactions to our analysis, we presented our preliminary results as a poster at the 2017 annual conference of the APRIL in Spokane, Washington. Feedback from our APRIL partners as well as CIL staff, consumers of CIL services, and other disability service professionals indicated that the geographic barriers to accessing CIL services varied significantly across the United States, suggesting that a more nuanced perspective was required for our analysis. For example, numerous service providers we spoke with explained that they often serve consumers up to 100 miles away from their main center offices. While consumers are rarely able to find transportation to cover such distance, center staff routinely travel to rural communities to provide services in consumers’ homes, at temporary “pop up” offices where they may co-locate with another agency once a month, or through “mobile units” where a traveling office space tours the service area (Atlantis Community, Inc., 2019).

Taking this into consideration, we shifted the scale of our analysis from the contiguous United States to case studies focusing on two states: Montana and Arkansas. We chose these states for two reasons. First, these are states with which the authors are familiar: Montana is the state of residence for the research team at the University of Montana and Arkansas is the main office location for our policy advisors at APRIL. Second, these two states are both rural, minimum-funded states (receiving the minimum base rate of federal funding to support independent living services) and in different geographic contexts (representing the western and southern regions of the United States). Based on stake-holder input, we expanded the road distances to 100 miles, broken into 25-mile intervals, and included local roads in addition to primary and secondary roads (interstates and highways) for our case study analyses. Increasing the detail of our analysis for these case studies allowed for a more refined local analysis. In addition, we used the same methods to analyze access to Area Agencies on Aging (AAA) in both Montana and Arkansas to explore the potential impact of cross-service partnerships to serve rural consumers. AAAs and CILs offer a range of similar services and serve populations with similar needs (such as social service advocacy, support for personal care attendants, and accessible transportation). In addition, partnerships between these organizations are often encouraged at the federal level through programs such as Aging and Disability Resources Centers and No Wrong Door systems (Administration for Community Living [ACL], 2017a).

Demographic information was collected from the U.S. Census 2011–2015 American Community Survey table on General Disability Characteristics (Table S1810), accessed via the American FactFinder (U.S. Census Bureau, 2015). Population and disability rates for each travel band increment were calculated using the demographics function within the network analysis tool. We calculated population estimates and disability rates for each 25-, 50-, 75-, and 100-mile travel bands around a CIL and AAA by summarizing across census tracts lying within each band.

Results

National Analysis

Examination of the national map (see Figure 1) provided a distinct difference in service coverage between the eastern and western halves of the United States. In the East, a significant portion of the region is within 65 miles (50-mile distance band plus 15-mile buffer) of a CIL, with notable exceptions in Appalachia, pockets of the deep South, and northern parts of Maine and Michigan. In contrast, geographic access in the western half of the United States is heavily concentrated around urban communities with many areas without coverage. Areas with limited or no access include large stretches of the Rocky Mountain and Great Plains regions, eastern Oregon, and Nevada.

Figure 1.

Map of CIL office locations in the lower 48 states of the United States with 50-mile road network travel bands and 15-mile local road buffer.

Note. Data sources are Independent Living Research and Utilization for CIL locations, U.S. Census Bureau TIGER products for geographic shapefiles. CIL = Center for Independent Living.

Arkansas

Arkansas has four CILs located in urban communities in the central and northwestern regions of the state. In Arkansas, the four 10-mile travel bands cover a majority of the state (see Figure 2). However, there are some notable areas with limited coverage: along the southern Arkansas and Louisiana border; a corridor of limited coverage between Sources for Community Independent Living Services, Inc., in the northwest corner of the state and the cluster of the three other CILs in the center of the state; and entire northeast region of the state. The northeast corner of Arkansas lies completely outside of the travel band network. This uncovered region includes a mid-sized city of over 50,000 as well as numerous small towns and communities.

Figure 2.

Map of Arkansas CIL locations with 100-mile travel band at 25-mile increments (right) and census tract disability rates (left).

Note. Data sources are Independent Living Research and Utilization for CIL locations, U.S. Census Bureau TIGER products for geographic shapefiles, and American Community Survey (2011–2015) for disability data (Table: S1901 Disability Characteristics). CIL = Center for Independent Living.

Demographic analysis (see Table 1) shows that 154,049 people with disabilities live within 25 miles of a CIL. Within the 25-mile travel band, disability rates are 14.52%, the lowest of any of the areas in our analysis. Within the 50-mile travel band, there are 72,370 people with disabilities, with a disability rate of 16.75%. Within the 75-mile travel band, there are 92,443 people with disabilities, with a disability rate of 18.26%. Within the 100-mile travel band, there are 68,441 people with disabilities, with a disability rate of 21.2%. Although the number of individuals with disabilities decreases with distance from a CIL, the disability rates increase. The regions of Arkansas outside the travel bands, or more than 100 miles from a CIL, contain 116,074 people with disabilities, and they have a disability rate of 18.94%. In general, as one travels further from a CIL, population decreases and disability rates increase. In Arkansas, approximately 116,074 individuals with disabilities are estimated to live further than 100 miles from a CIL office.

Table 1.

Arkansas and Montana Population Numbers and Disability Rates by CIL Travel Band Increment and Outside of Travel Bands.

Disability nos. & rates	State population	Within bands	25 miles	50 miles	75 miles	100 miles	Outside bands
Arkansas
Total	2,935	2,323	1,061	432	506	323	613
Disability	503	387	154	72	92	68	116
Disability rate	17.2%	16.7%	14.5%	16.8%	18.3%	21.2%	19.0%
Montana
Total	999	879	631	123	80	44	121
Disability	133	116	79	18	12	7	17
Disability rate	13.3%	13.2%	12.5%	14.5%	14.6%	15.8%	14.4%

Note. All population estimates are in thousands. Population estimates are from the 2011–2015 American Community Survey 5-year estimates, Table: S1901 Disability Characteristics. CIL = Center for Independent Living.

Montana

Montana has four CILs, with 10 office locations established across the state. Montana’s CILs have offices in all major urban centers as well as some secondary offices in smaller rural communities. Our results (see Figure 3) show that most offices are located in the western half of the state, with the 100-mile network band reaching just shy of the northwestern and southwestern borders of the state. However, there are considerable gaps in coverage in central and eastern Montana. These areas include several rural communities with populations ranging from 5,000 to 8,000 that remain unserved by CILs. Demographic analysis (see Table 1) shows that 78,914 people with disabilities live within 25 miles of a CIL. Within the 25-mile travel band, disability rates are 12.52%. Within the 50-mile travel band, there are 17,835 people with disabilities, with a disability rate of 14.48%. Within the 75-mile travel band, there are 11,664 people with disabilities, with a disability rate of 14.56%. Within the 100-mile travel band, there are 7,099 people with disabilities, with a disability rate of 15.84%. Generally, as one travels further than 25 miles from a CIL, population declines but disability rates remain steady at 14% to 15%. In Montana, approximately 17,357 individuals with disabilities are estimated to live further than 100 miles from a CIL office.

Figure 3.

Maps of Montana CIL locations with 100-mile travel bands at 25-mile increments (top) and census tract disability rates (lower left).

Note. Data sources are Independent Living Research and Utilization for CIL locations, U.S. Census Bureau TIGER products for geographic shapefiles, and American Community Survey (2011–2015) for disability data (Table: S1901 Disability Characteristics). CIL = Center for Independent Living.

Area Agencies on Aging

The previous analyses demonstrate that access to CIL services varies depending on the number of center locations throughout the state as well as the size of the state itself. However, in both Montana and Arkansas, there are regions within the state that are more than 100 miles from a CIL. Collaborating with other organizations to leverage resources and reach these underserved communities is one strategy for expanding access to CIL services. AAAs are nonprofit organizations that coordinate and provide a wide range of services (e.g., meals, in-home assistance, community access) to support older adults to live independently. These AAAs are a potential collaborative partner for CILs to expand service into rural underserved areas (ACL, 2017b).

By incorporating AAAs in our analysis, we found a substantial increase in service coverage in both Arkansas and Montana (see Figure 4 and Table 2). In Arkansas, this resulted in a nearly 30% increase in the number of people with disabilities living within 100 miles from either a CIL or an AAA, representing an increase of 112,795 people with disabilities. In Arkansas, the number of people with disabilities living further than 100 miles from services drops from 116,074 to 3,279. This increase in coverage comes primarily from an AAA located in the northeast corner of the state that was entirely outside of the 100-mile travel band. In Montana, we also noted a substantial increase in access to services by including AAA locations in the analysis. An estimated additional 11,622 individuals with disabilities live within 100 miles of either a CIL or an AAA, representing a 10% increase in service access. The number of people with disabilities outside of our travel bands drops from 17,357 to 4,889. Again, this increase in coverage comes primarily from the addition of four AAA locations serving the central and eastern portions of the state. However, in both Arkansas and Montana, the most rural communities remain on the fringes of these 100-mile travel bands (with the southeast corner of Montana remaining unserved), and although partnerships like these may hold promise for expanding services, reaching these remote communities and individuals remains a challenge.

Figure 4.

Maps of Arkansas and Montana with combined CIL and AAA travel bands.

Note. Data sources are Independent Living Research and Utilization for CIL locations, U.S. Census Bureau TIGER products for geographic shapefiles. CIL = Center for Independent Living; AAA = area agencies on aging.

Table 2.

Montana and Arkansas Populations Inside and Outside CIL/AAA 100 Mile Travel Bands.

	Inside CIL/AAA 100-mile band		Outside CIL/AAA 100-mile band
State	Total population	Disability population	Total population	Disability population
Arkansas	2,913,597	500,098	21,119	3,279
Montana	961,067	127,134	31,302	4,889

Note. Population estimates are from the 2011–2015 American Community Survey 5-year estimates, Table: S1901 Disability Characteristics. CIL = Center for Independent Living; AAA = area agency on aging.

Discussion

The results of this study reveal that access to and delivery of rural independent living services varies dramatically across the nation and depends not only on geography but also on state and federal policies. It is clear, however, that in the most rural areas access to services is limited.

As noted above, access to transportation is a significant barrier for rural people with disabilities. In response to this, many CILs have staff members who travel to provide services in people’s homes or to conduct outreach and advocacy activities. For example, one center in Arkansas estimated that their staff spent up to a third of their time providing services outside the office. Traveling to rural communities, often up to 100 miles away, adds considerably to the costs of providing services in rural communities, a serious issue as CILs are chronically underfunded. A 2014 report from APRIL estimated that a single CIL needs US$570,000 as base funding for a fully operational center, which is well above the estimated US$250,000 a CIL receives through Part C federal funding (APRIL, 2014). States are apportioned funds based on population served, which leaves centers serving rural populations at a disadvantage. Although the population of people with disabilities in these communities may be relatively low, rates of disability are higher than in urban areas (Myers et al., 2016), as is the cost of providing services. Although these Part C dollars represent only a portion of a CIL’s operating budget, they are often considered a center’s core funding. For CILs to overcome the barriers they face serving people with disabilities in rural communities, increased funding is critical.

While increased funding for CILs is a critical strategy for increasing rural access to independent living services, in state and federal policy environments that keep budgets tight, increasing funding is often not an option, and alternative paths must be explored. One strategy is to collaborate with other existing organizations to leverage resources and expand services to rural communities on the fringes of a CIL’s service area. For example, some innovative models of providing transportation to people with disabilities in rural areas exist, such as the voucher model in which organizations collaborate with individual drivers to pay for rides via a voucher “traveler check” (Gonzales et al., 2006). Collaboration between organizations to fund and develop systems like this (e.g., through leveraging volunteer networks or vehicles) holds promise but challenges remain.

Evaluations of similar programs called No Wrong Door systems (ACL, 2017a) identified a number of barriers to collaboration, including differences in values and philosophy, financial inequity, competition across organizations, and differences in shared standards of service (Fox-Quamme, 2014; Snavely & Tracy, 2000; Sword, 2015). Furthermore, these organizations are often clustered in urban communities that have the resources to support their infrastructure and staffing needs. As large geographic distances in rural Western states present a significant barrier to services, even successful partnerships may not significantly increase the number of people served. For example, research on food resources like farmers markets and grocery stores has revealed that resources tend to be clustered geographically. Therefore, focusing on increasing the number of resources (e.g., health and social service resources like CILs and farmers markets), while not considering where they are located, may not be an effective strategy for addressing the problem of access (J. L. Sage & McCracken, 2017). In states where the geography is less expansive, however, partnering with other agencies to serve outlying communities may prove effective, as seen in expanded coverage in Arkansas. Our findings indicate that strategies that might suit rural communities in one geographic context may not work in another.

Study Limitations

There are several challenges and limitations in defining access to CIL services for people with disabilities. Most access studies, including this one, define access based on travel time or distance, with the assumption that individuals seeking service are traveling to a set location. However, this assumption can quickly disintegrate when considering access for people with disabilities. In fact, these individuals, particularly in rural areas, have reported access to transportation (with a personal vehicle, public option, or ride-hailing services) to get to service locations as a significant challenge (Hammel et al., 2015; Iezzoni et al., 2006). This analysis must be interpreted with this in mind, and as such, we must recognize that for rural people with disabilities, transportation to services represents an additional barrier.

We defined access as travel distance from a CIL office location; however, this definition is complicated by the fact that CILs have predefined county-level service areas. CILs are generally funded to serve not only the cities and towns in which they are located but also surrounding counties. These service areas are outlined in the CIL’s federal funding proposal and dictate where the center can perform core services (information and referral, independent living skills training, peer support, advocacy, transition). Ultimately, how centers define these service areas varies based on availability of resources, plans for growth and development, and state politics and policies. In addition, whether a CIL can provide services to individuals outside these defined service areas depends on funding source and service type. For example, federal (Part C) funding can only be spent in the CIL’s county service area (except in an emergency such as a natural disaster), but state funds and personal assistance services can often be provided beyond these county boundaries. Finally, data on these counties’ service areas are disjointed and their availability limited. Because both county service areas and funding streams vary dramatically from state to state, and because there is no current national database of CIL county service areas, we used a set geographic travel distance to define service access. A more detailed analysis of funding streams and defined service areas is needed to build a more complete picture of access to independent living services.

An additional limitation of this analysis is that it is based on travel distance rather than time. Travel speeds vary based on both location and road type (i.e., interstates, highways, and local roads), and although our data set did not include time variables, previous work has illustrated that including travel time and distance may lead to more robust results (Onega et al., 2008; Pedigo & Odoi, 2010; Phibbs & Luft, 1995). For analysis of rural communities, this limitation may be less substantial because travel time versus distance is a larger concern in urban settings where traffic congestion can significantly impact travel.

Conclusion

CILs provide valuable services to people with disabilities who are living independently in the community. However, access to these services is not universal. Geographic analysis, specifically transportation network analysis, is a valuable tool for exploring access to CIL services for people with disabilities. The results from this study reveal regional variation in access to CIL services across the United States, with a majority of CIL offices located in urban communities. This leaves rural communities, particularly across the rural Western states, underserved. In focusing our analysis at a local level (in our case studies of Montana and Arkansas), we linked to demographic data from the ACS to better understand how these variations in access affect people with disabilities in rural areas. At the local level, we found that (a) in both Montana and Arkansas, the communities with the highest rates of disabilities are located at the furthest edges or beyond our 100-mile travel band, and (b) partnering with AAAs has potential for expanding access.

Although not every person estimated to have a disability by the American Community Survey will desire or utilize CIL services, these estimates represent potential CIL consumers as well as a population that might benefit from outreach and advocacy. This analysis is not without limitations, but these findings set the stage for exploring policy solutions to expand access to CIL services through increased funding and cross-organizational collaborations to leverage rural resources.