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.

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 appointments	Care providers are not allowed to accompany clients on free rides to medical appointments because of current rules	Talk to the providers and provide training to ensure that care providers are allowed (at all times) to accompany their client	Policy 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

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.

Category	Positive outcomes	Outstanding issues
Transportation	Clearview 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

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.