Abstract

People with disabilities (PWD) experience significant health disparities, at least partly due to difficulties accessing health care. These difficulties are multi-focal, including difficulties with transportation, effective communication, physical accessibility, and provider attitudes. Community engagement offers one method for working with local communities around health care access for PWD. By engaging PWD and the local infrastructure (e.g., providers, government, transportation, advocates), unique solutions are generated and awareness in the community is increased. We describe the use of our approach "Community Engagement in Health Care" with one such Oregon community.


Introduction

Recent population estimates indicate that 54-57 million adults are living with disabilities in the United States (Brault, 2012; Brucker & Houtenville, 2015; Iezzoni, 2011; Iezzoni, Kurtz, & Rao, 2014). Rates of disability incrementally increase with age, ranging from 21% over age 15 to nearly 50% of those over age 65 (Brault, 2012). For adults with disabilities, 12.6% report one type of functional limitation, and 8.2% report disability in two or more domains (e.g., communicative, physical, vision, hearing, cognitive, emotional).

People with disabilities (PWD) are one of the largest, yet under-recognized, health disparity groups (Iezzoni, 2008; Iezzoni, 2011; Krahn, Walker, & Correa-De-Araujo, 2015; Lee, 2010; Rowland et al., 2014). People with disabilities report poorer self-rated health, and greater incidence of anxiety/depression than their non-disabled counterparts (Iezzoni, 2011). PWD also experience poorer self-reported mental health, and higher rates of obesity and physical inactivity (Lee, 2010). While some of these outcomes may be related to the health condition causing the disability, a large percentage of these outcomes are considered avoidable, or a health "disparity."2

For people with disabilities, health disparities appear to be at least partially attributable to a greater prevalence of risk factors. PWD experience higher rates of unemployment, poverty, smoking, physical inactivity, obesity1, and lack of medical insurance than those without disabilities (Brucker & Houtenville, 2015; Iezzoni, 2011). For PWD, these risk factors increase the risk of secondary effects of the primary disabling condition, such as the development of pneumonia in a person with a spinal cord injury. These risk factors also contribute to the development of secondary health conditions unrelated to the primary disability, such as heart disease, stroke, and diabetes.

These disparities in health appear to at least be partially due to disparities in health care (Iezzoni, 2011). Mahmoudi and Meade (Mahmoudi & Meade, 2014) report that people with physical disabilities have a 57%-85% higher odds of having unmet medical, dental, and prescription needs than their nondisabled counterparts. In this sample, factors of low income and lack of health insurance contributed to greater incidence of unmet health care needs for PWD. Iezzoni (2011) reports that PWD report poorer quality of care than those without disabilities, including lack of specialist visits, lack of telephone access to a usual care provider, and not having a usual care provider due to financial reasons. Iezzoni also reports that women with disabilities are significantly less likely than women without disabilities to receive the preventative screening services of mammography and pap smears.

Reasons for these health care disparities appear to be multi-dimensional. People with physical disabilities report physical access barriers, such as non-adjustable exam tables, inaccessible scales and imaging equipment (Iezzoni, 2011). Beyond these physical accessibility issues, PWD are more likely than those without disabilities to report issues with effective communication, such as providers not listening to them, explaining things in a way they can understand, or showing respect for what they say (Iezzoni, 2011; McDoom, Koppelman, & Drainoni, 2014). Barriers for people with sensory disabilities also limit health care access, such as the lack of ASL interpreters, information/forms in Braille or large print, and amplification devices (Lagu, Iezzoni, & Lindenauer, 2014). In a sample of Medicaid-eligible PWD, the top reported barriers to health care reported were: communication (talking about needs, understanding provider, making appointments), physical access (using equipment, getting into building/exam room), and transportation (McDoom et al., 2014).

In rural communities, these health care accessibility challenges appear to be greater. Rural communities typically lack the specialists needed to care for the unique needs of PWD (Horner-Johnson, Dobbertin, Lee, & Andresen, 2014; Horner-Johnson, Dobbertin, & Iezzoni, 2015; Iezzoni, Killeen, & O'Day, 2006). In addition, factors such as limited accessible transportation, lack of provider experience/training with PWD, limited providers accepting Medicaid, and older, inaccessible facilities, may be more prevalent in rural areas (Iezzoni et al., 2006). Limited data exist on health outcomes specifically for PWD living in rural areas, however a 2015 study found that women with disabilities living in rural areas had significantly lower odds of receiving screening for cervical cancer than women with disabilities living in urban areas (Horner-Johnson et al., 2015). This urban-rural disparity in cancer screening was also found in a study examining colorectal cancer screening for adults aged 50-64 with disabilities (Horner-Johnson et al., 2014).

These disparities in health care may be partially due to a mismatch between the medical model and social models of health. The medical model lens with which health care providers view PWDs may be a factor in the implementation of accessibility standards for what is seen as a minority group. The medical model views the cause of the disability and the subsequent responsibility for dealing with it as in the sphere of the individual (Dirth & Branscombe, 2017). The social model, on the other hand, views the disability as arising from the social and built environment, and emphasizes environmental solutions to civil rights inequities. The social model states that disability itself is not unhealthy, rather the barriers inherent in the environment limit PWD's access to "healthy" means/ways of living that impede their ability to be healthy.. Viewing disability under the social model is a huge paradigm shift for most medical professionals. Under the medical model they do not see the "need" to change the environment, rather it is the PWD that needs to change to be healthy. That is why we and others do the work we do, to advocate for policy, systems and environmental changes that are inclusive of PWD.

Community Engagement

Community Engagement (CE) offers a potential solution to address health care disparities for PWD, particularly those in rural areas. CE is the process by which community members come together to identify and find solutions to community problems. CE is defined as "the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people" (Department of Health and Human Services, 2011, p.9). The goals of community engagement include establishing ongoing partnerships, building trust, increasing communication, and improving health outcomes. An additional goal of engaging in CE is increased awareness of the community around the targeted problem area.

The particular relevance of utilizing a CE approach to health care lies in the view that health is the result of an interaction between an individual and his/her social, cultural, and physical community (Department of Health and Human Services, 2011). This view is in alignment with the Health Quality of life which the Centers for Disease Control defines as an individual's or a group's perceived physical and mental health over time, and includes predictors at the individual, cultural, and social levels (Centers for Disease Control, 2016). Health inequities are seen as being rooted in the larger socioeconomic environment. As such, the best way to approach these barriers and inequalities is to engage those community partners who understand the unique factors within that target community. Community engagement initiatives have successfully addressed a variety of social and health goals, including social determinants of health (Milton et al., 2011), family planning (Carter, Tregear, & Lachance, 2015), and health behavior (O'Mara-Eves et al., 2015).

Community Engagement in Health Care (CEHC)

In order to address access to health care for PWD, the Oregon Office on Disability and Health (OODH) at the Oregon Health Sciences University and the Northwest ADA Center (NW ADA) at the University of Washington, implemented a community engagement initiative entitled "Community Engagement in Health Care" (CEHC). The Northwest ADA Center is one of ten regional centers in the ADA National Network funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR). Each regional center focuses on its region's unique needs.

OODH had successfully been using a community engagement approach to address general community accessibility in rural Oregon for more than a decade before narrowing the focus to health care specifically (Drum et al., 2009). The CEHC approach has been used in various communities in the United States through collaborative partnerships (Research and Training Center on Measurement and Interdependence in Community Living, 2010; Washington University in St. Louis, 2016), and continues to be used to address health care in the northwest.

While community engagement initiatives and approaches share some common theoretical principles, they differ in the process for implementation. Principles of Community Engagement (Department of Health and Human Services, 2011) offers four common practice elements based upon the literature: knowing the community; establishing positions and strategies, building and sustaining networks, and mobilizing constituencies. These elements are reflected in the four key phases of the CEHC process: town hall meetings, infrastructure meetings (meeting of community stakeholders, including PWDs, community officials, organizations, health care providers); mobilization; and regular follow up meetings (nine months post infrastructure meeting). Overarching and key to the success of each phase is the involvement and guidance of a "local backbone agency." Interested readers are referred to the Community Action Guide: Access to Health Care Version 3.0 (Oregon Office on Disability and Health, 2015) for a more detailed description of the community engagement process utilized in the CEHC.

Case Study: Pendleton, Oregon

The Pendleton CEHC began in late 2013 when OODH teamed up with NW ADA Center to implement a CE initiative specific to health care access in Pendleton, Oregon. Pendleton is the county seat of Umatilla County in eastern Oregon, a city of approximately 16,000 residents situated in a rural county. Pendleton was chosen to be part of the CEHC project given its rural location and strong ties with the local disability community.

Identifying a Backbone Agency: The first step in the process was to identify a local, community agency as the "backbone" for the CEHC. In previous CE initiatives, OODH found that having a local, coordinating organization was crucial to recruiting participants and maintaining momentum (Drum et al., 2009). In this case, a local non-profit, Clearview Mediation and Disability Resource Center (Clearview MDRC) was enlisted as a partner. Clearview MDRC's mission is to provide the Pendleton community with training and understanding of people with disabilities. As the backbone agency, Clearview MDRC served as the local resource and organizer for both the town hall and infrastructure meetings as well as the workgroups that developed as a result of the two meetings. In addition, Clearview MDRC kept the momentum going during the mobilization phase, and helped coordinate the follow up meetings.

Town Hall Meeting: A town hall style meeting was conducted in the community of Pendleton. The CEHC team (OODH, NW ADA Center, and Clearview MDRC) enlisted the local newspaper, radio station, and mailings to announce the event to community members with disabilities and other stakeholders. Participants included people with disabilities and their family members as well as representatives from the centers for independent living/advocacy centers, and other disability service providers. Approximately 25 people attended the town hall meeting, and discussion focused on three categories related to accessing health care: Transportation, Facility Access and Services/Policies, and Provider Attitudes, Communication, and Disability Knowledge. The format of the town hall meeting consisted of guided discussion around resources/strengths, barriers, and prioritized barriers (see Community Action Guide Access to Health Care Version 3.0, 2015). Town hall participants ranked their top three prioritized barriers in each of these categories, and identified potential solutions to be presented to, and follow up by, the infrastructure meeting attendees.

Community Infrastructure Meeting: The infrastructure meeting was held in Pendleton the day after the town hall meeting and included key health care professionals, public and private transportation providers, city officials, hospital administrators, local school district personnel, and the county public health department employees, Coordinated Care Organization (CCO) representatives, and several disability advocates who had also attended the Town Hall meeting. In all, eleven people participated in the infrastructure meeting, in addition to the CEHC team members from Clearview MDRC, OODH, and NW ADA center.

OODH and NW ADA Center presented statistics related to risk behaviors, health care outcomes and disability in Oregon, based upon data from the Behavioral Risk Factor Surveillance System (BRFSS). Meeting participants next examined the issues, priorities and solutions that were discussed at the town hall meeting for each of the three categories of barriers to health care. With input from the Infrastructure meeting attendees, additional potential solutions were presented, and a number of workgroups were formed to work on the potential solutions. A resource guide was provided to the attendees, which provided structure to the discussion (see Supplementary Material for a sample workbook page). Table 1 outlines the barriers, priorities, discussion/solutions, and action plans identified during the community infrastructure meeting.

Mobilization. Workgroup members developed an action plan for each of the identified priorities and implemented those plans over the next six months. The backbone agency, Clearview MDRC, was instrumental over these months as the local coordinating agency. Clearview MDRC helped organize workgroup meetings and served as a member on each committee. NWADA Center continued to check in with Clearview MDRC over these months, and offered technical assistance and the development of materials and resources. Table 1 outlines the results of the mobilization activities undertaken by the various workgroups, Clearview MDRC, and the NW ADA Center.

Table 1: Barriers, solutions, action plans, and results.
 Barriers
Identified
Discussion &
Potential Solutions
Action
Plans
Results
Trans-
portation
Lack of medical transportation for people living outside Pendleton Limited funds to help people without Medicaid coverage to pay for their medical transport outside of Pendleton. However, when funds run out, there are is no additional money.Look into means/money when funds run out Special transportation and grant funds are being researched and pursued to obtain funds to cover both Medicaid and Medicare recipients' medical transportation needs.
Concerns with timeliness and dependability of taxis when requesting $1 rides:
  • It can be difficult for people to schedule their rides 24 hours prior to appointments when requesting $1 rides.
There appears to be an issue for transportation staff working with PWD in helping them to understand policies and procedures regarding the need to reserve a ride 24 hours prior to appointments for $1 rides.Educate disability providers regarding the policies and procedures. The information is already explained in the transportation book for PWD; this resource was more widely disseminated in order to inform community members with disabilities
Concerns about safety procedures not followed by some of the transportation drivers It is not mandatory for drivers to become PASS (Passenger Service and Safety) certified.

There is an on-line training that includes disability and etiquette and safety that most drivers are required to take.

Riders can file a complaint with transportation agencies
Investigate bringing PASS training to Pendleton

Inform riders about how to file compliments and complaints
Required training for taxi drivers is still in progress. Trying to find funds to bring the PASS training to Pendleton.
Lack of public awareness and utilization of the transportation resource book Community agencies plan a comprehensive mass media marketing campaign of the transportation resource book for constituents with disabilities. Resource is available as a book, brochure and on-line. Coordinated effort to help get the word out. Constituents were informed resource book via an outreach campaign through the East Oregonian newspaper, the city council, chamber of commerce and various disability agencies
CCO's free Medicaid transportation services does not allow clients' care providers to accompany the client to their appointmentsCare providers are not allowed to accompany clients on free rides to medical appointments because of current rulesTalk to the providers and provide training to ensure that care providers are allowed (at all times) to accompany their clientPolicy was changed to ensure care provider could, at all times, accompany their client to their medical appointments
Facility Access and Services/
Policies
Exam Rooms:
  • Exam rooms are too small and tables are too high and too narrow making it difficult to transfer
  • Lack of accessible scales
Improve accessibility according to recommendations from the Access Board Guidelines (insert reference) Educate providers on the need of having accessible exam room equipment

Issues were discussed with the local CCO who is responsible for the Community Health Assessment that investigates accessible equipment
Fact Sheets were distributed on topics related to accessibility, including accessible health care, diagnostic and medical examination equipment.
Accessible exam tables and scales were purchased for the new hospital.
Physical access:
  • Pharmacy and other building difficult to get into: no ramps, heavy doors, narrow doorways
  • Hard to see signage at hospitals and clinics
Parking Areas:
  • Faded accessible striping is hard to see at local clinics parking lots
  • Lack of accessible van parking spaces at local hospital
Improve access via compliance with the 2010 ADA Standards for Accessible Design (insert reference) Inform building and facility owners of ADA guidelines

Discussion with hospital representatives about the ADA requirement for more van accessible spaces

Business and facilities owners reminded of their responsibilities and options when they renew their city permits.
An Accessibility Checklist was developed for Oregon health care facilities and clinics (see Appendix B)
NW ADA Center provided a training to Clearview MDRC and other community providers on using the Oregon Accessibility Checklist
Hospital added accessible van parking spaces
Local clinics restriped their parking lot
Provider attitudes, commun-
ication and disability know-
ledge
Lack of understanding about providing "Effective and Appropriate Communication", including:
  • Alternate technologies for commun-
    icating with PWD
  • ASL interpreters available and provided upon request
  • Intake forms and materials provided in alternate formats i.e., large print.
  • Individualized assistance provided upon request
Lack of understanding about providing "Effective Communication" and providing materials in alternative formats.
There is a need for disability awareness training and communication etiquette.
Educate front-line staff and providers Disability and Etiquette Training was provided by Clearview MDRC for hospital front line staff

The ADA Center's online course "Respectful Interactions: Disability Language and Etiquette", was also promoted and disseminated among health care professionals
Lack of support for those who need help navigating the health care system People are turned away from care if they cannot help themselves and navigate the system, or they get so frustrated they give up and do not follow through on their own health care. This has been an ongoing issue and should be resolved with the development of the CCOs (Coordinated Care Organizations)3 CCO's implemented an "Assister", or health care navigator, that works with patients to help them navigate the health care system
PWD having to go to outside of Pendleton to receive care
  • There are no specialty providers in town taking Medicaid and/or lack of specialty/
    knowledg-
    eable providers
This issue might change due to the development of the CCO's… is it assumed that this might get resolved Educate and empower PWD and their families and service providers to advocate for care within Pendleton. In progress with the development of the CCO's however, it is a difficult issue to resolve

Workgroups prioritized barriers in the following categories: transportation, facility access and services/policies, and provider attitudes, communication and disability knowledge. Transportation barriers identified included lack of transportation, issues with dependability, safety concerns, limited public awareness of resources, and policies that excluded caregivers. Facility access and services/policies barriers included physical access and signage issues in exam rooms, facilities, and parking lots. Provider attitudes, communication, and disability knowledge barriers included lack of understanding regarding effective communication, lack of support for people needing assistance navigating the system, and limited specialty providers. The workgroups developed action plans specific to each barrier.

Follow-up Meeting. The NW ADA Center, OODH, and Clearview MDRC organized a focus group meeting seven months after the initial town hall and community infrastructure meetings. The focus group meeting consisted of the workgroup members and the infrastructure meeting participants. The purpose of the focus group meeting was to review the identified barriers, the action steps of the workgroups, and get the participants' perspective on changes they have seen in the community. Discussion from this follow up meeting regarding both positive outcomes as well as outstanding issues are summarized in Table 3.

Table 2. Positive outcomes and outstanding issues identified at follow-up focus group meeting.
CategoryPositive outcomesOutstanding issues
TransportationClearview MDRC purchased two new transport vans and trained drivers through a special transportation fund

A local transportation resource book was more widely distributed, and more copies were printed
Continued training of taxi drivers is needed on disability etiquette and accommodations
Facility Access and Services/Policy The local hospital moved to a new building that coincided with the CEHC. This provided an opportunity for conversations between CEHC workgroup members and hospital administration, and thus changes at the hospital included the addition of:
  • Several additional accessible van parking spaces
  • Exam tables that double as scales (ideal for weighing wheelchair users)
  • Lifts to move people with mobility impairments onto exam tables
  • Larger rooms to maneuver wheelchairs
Accessibility needs for people with sensory or speech impairments

Access limited a to specialty care: specialists need to travel to rural areas or coordination of patients to travel to larger cities is needed
Provider Attitudes, Communication, and Disability Knowledge Increased communication regarding disability issues with both the hospital administration and the CCOs' representatives Limited providers knowledgeable about disability accepting Medicare and Medicaid

Unable to convince hospital officials to offer disability etiquette training

In the transportation category two new transport vans were obtained, drivers were trained, and a resource book was more widely distributed. An outstanding transportation issue was that taxi drivers were needing training on disability etiquette and accommodations. In the facility access and services/policy category, the local hospital added several accessible van spaces, accessible exam tables/scales, lifts, and more accessible exam rooms. Outstanding issues include addressing access for people with sensory and speech impairments, and lack of local specialty care. In the category of provider attitudes, communication, and disability knowledge there was increased conversation with the hospital and CCO's. Outstanding issues included limited providers with disability knowledge who accept Medicaid/Medicare, and lack of disability etiquette training at the local hospital.

Discussion

The CEHC initiative successfully engaged the rural community of Pendleton in identifying and addressing issues related to access to health care for PWD. Utilizing a community engagement approach, the "outside" agencies (OODH and NW ADA Center) were able to partner with a variety of stakeholders in Pendleton, including hospital administrators, health care professionals, CCO professionals, transportation representatives, disability service providers, and people with disabilities and their family members. A local agency acted as the "backbone organization," while several workgroups were established to tackle the most pressing issues identified by the community. The outside agencies remained a resource and partner throughout the process, including supporting the mobilization efforts that were directed by the newly created workgroups.

Engagement in Pendleton indicated that "success" was multi-pronged: action items were addressed; awareness of resources improved; and community collaboration and disability awareness increased. First, a number of action items were completed that had the potential to significantly impact accessibility: accessibility checklists were developed; taxi drivers were trained; fact sheets were developed; ADA compliance improved (e.g., increase in the number of accessible parking and accessible exam tables). In other instances, the process brought greater awareness of already existing resources. For example, a resource book on transportation was more widely disseminated. Finally, engagement in the CEHC process brought about increased awareness in the community of disability issues, and laid the foundation for future partnerships.

Facilitators to CEHC Process

A number of strengths were in place that supported the success of the Pendleton CEHC process. From the Community Engagement perspective, these factors were instrumental in supporting the practice elements of: Knowing the community; Establishing positions and strategies; Building and sustaining networks; and Mobilizing constituencies (Department of Health and Human Services, 2011). Table 3 outlines these practice elements and how these were exemplified throughout the process.

Overarching all these elements was the presence of a strong local organization. Clearview MDRC had a history of working with the city government on accessibility issues and was highly involved in the project from conceptualization to follow-up. Clearview MDRC not only served as a member on each of the workgroups, but provided the structure necessary for the workgroups during the mobilization phase by providing meeting space, monitoring of timelines, and timely communication with the NW ADA Center and OODH.

While our experience in Pendleton was successful, our experience in several other communities was not as positive. These data points, although anecdotal, provide important evidence of the crucial elements for a successful community engagement initiative. First, the strong local presence of Clearview MDRC was a unique element in Pendleton. Clearview MDRC had a history of bringing community members together to address disability-related barriers. This closely aligns with the concept of having a "backbone" local, organization in Collective Impact approach to community engagement (Kania & Kramer, 2011). Second, the community had a history of working collaboratively on healthcare with the inception of the Oregon Coordinated Care Organizations (CCO's). Like the CEHC Project, the CCO is governed by a partnership among health care providers, community members, and stakeholders in the health systems. This culture of collaboration in Pendleton appears to be a crucial element that was not present in the other communities we worked with. Finally, both NW ADA Center and OODH invested considerable time and resources to monitoring the progress, providing educational resources, and reaching out to all the stakeholders throughout the mobilization process in Pendleton. This involvement, as compared with earlier CEHC initiatives, proved central to the success in Pendleton.

Table 3. Representation of Community Engagement Practice Elements in the CEHC
Practice ElementDefinitionCEHC Project
Know the community"The intelligence gathering
function behind planning, decision-making, and leveraging resources to collaboratively achieve anticipated or agreed-upon outcomes with community partners" (p.97)
-Use of data from
large-scale surveys on health disparities and disability
-Discussion with
disability community representatives and people with disabilities
Establish positions
and strategies
"Identify the engaging organizations' priorities regarding community health issues as well as any limitations in the organizations' mission, funding, or politics" (p.97)
"Development of positions and strategies allow an organization to effectively plan its role in the process" (p.97)
-Establishment of
priorities and solutions by community stakeholders
-Identifying workgroups and team members responsible for action steps
-NWADA/OODH acted as information source and collaborator
Build and sustain networks "Developing networks that have active communication channels, fluid exchange of resources, and energetic coordination of collaboration activities among network partners" (p.99) -Infrastructure meeting with community organizations and PWD to prioritize and refine solutions
-Establishment of workgroups including stakeholders from 10 community organizations
-Regular communication between workgroups, backbone organization, and NWADA/OODH
Mobilize constit-
uencies
"Moving communities through a process of dialogue, debate, and decision making to obtain their commitment to a collaborative goal" (p.100)
"implementing activities…monitoring, evaluating, and adjusting activities" (p.100)
-Mobilization phase with involvement from backbone organization, and frequent
monitoring by NWADA/OODH

Future Directions

The success of the CEHC in Pendleton provides the foundation for moving forward with more systematic evaluation. Pendleton provides some preliminary process-based evidence, in that the process was feasible, and it worked as intended (e.g., action steps were completed, and goals were attained). As we begin to engage more communities in the CEHC process, we will systematically investigate the outcomes related to health care access. These outcomes will include both proximal outcomes specific to action plans (e.g., number of trainings completed and number of accessible parking spaces created), as well as more distal outcomes (e.g., attitudes toward disability, and perceptions of health care accessibility for PWD). Finally, long-term effects of the CEHC process need to be examined to determine whether results are maintained, and/or participants continue to work together on subsequent initiatives.

Future endeavors will also systematically investigate factors related to outcomes, including those related to the process, the participants, and the community infrastructure and culture. Anecdotally, from our experience we have found that factors such as considerable representation of the community, a strong backbone organization, and structured guidance from OODH/NW ADA Center, seem to be associated with positive outcomes. Other factors may also be facilitators to success, including, but not limited to, the size of the community, diversity of those participating in the town hall/infrastructure process, buy in and support from community leaders, prior collaborations, and disability awareness in the community. In particular, there seems to be very limited data on people with cognitive and mental health disabilities and their experiences with healthcare. In the future we will explicity try to recruit a diverse constituent pool for the town hall and infrastructure meetings in order to ensure that CEHC process is as comprehensive as possible.

Conclusions

Community Engagement in Health Care provides a systematic process for getting community members involved in solving issues related to the well-being of PWD. For people with disabilities, access to health care is a multi-faceted problem that involves transportation, facility access and services/policies, and providers' attitudes, communication, and disability knowledge. By engaging the community infrastructure and PWD, problems and solutions are identified that are unique to that community. Bringing together diverse groups can also increase awareness of health care access issues for PWD, and help to lay the foundation for future collaborative endeavors.

Acknowledgements: We gratefully acknowledge the assistance of John Dineen. This work was supported in part by grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), ADA National Network grant (90DP0016). This publication was supported by Cooperative Agreement Number U59DD000942 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

Supplement: Sample Workbook Page
Infrastructure Matrix: Transportation
Engagement Issue
Validation Issue
Who Knows about this issue?
Volunteer/s to take the lead?
Next Steps

Questions to think about:

How will you work with/involve the disability community?

Do you foresee difficulties in resolving this issue?

What resources are needed?

What type of technical assistance is needed?

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Endnotes

  1. Corresponding author: Kathe F. Matrone, PhD, CRC, Director, Center for Continuing Education in Rehabilitation, University of Washington, 6912 220th St. SW, Suite 105, Mountlake Terrace, Washington 98043, Email: matrok@uw.edu
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  2. Although beyond the scope of this article, it should be noted that some scholars refute the notion of fat as a necessarily unhealthy state of being. Under this perspective, fatness/obesity is viewed as being a socially constructed phenomenon similar to disability (Duncan, 2008; Shalma & Michalko, 2008).
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  3. At the time of the CEHC project, Coordinated Care Organizations (CCO's) in Oregon were beginning to be established. The CCO's are umbrella organizations that govern and administer care for people eligible for the Medicaid, including those also covered by Medicare. Like the CEHC Project, the CCO is governed by a partnership among health care providers, community members, and stakeholders in the health systems.
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