Maternal and Child Health Journal

, Volume 16, Issue 1, pp 21–30

A Community Engagement Process for Families with Children with Disabilities: Lessons in Leadership and Policy

Authors

    • Child Development Rehabilitation CenterOregon Health & Science University
  • Consuelo Arauza
  • Kim Folsom
    • Virginia Garcia Memorial Health Center
  • María del Rosario Luna
  • Lucy Gutiérrez
  • Patricia Ohliger Frerking
    • Health Advocacy Solutions, LLC
  • Kathleen Shelton
    • Child Development Rehabilitation CenterOregon Health & Science University
  • Carl Foreman
    • Hatfield School of GovernmentPortland State University
  • David Waffle
  • Richard Reynolds
  • Phillip J. Cooper
    • Hatfield School of GovernmentPortland State University
Article

DOI: 10.1007/s10995-010-0666-8

Cite this article as:
Vargas, C.M., Arauza, C., Folsom, K. et al. Matern Child Health J (2012) 16: 21. doi:10.1007/s10995-010-0666-8

Abstract

This article examines a community engagement process developed as part of leadership training for clinical trainees in the Oregon Leadership Education for Neurodevelopmental and Related Disabilities (LEND) Program in a complex community with diverse families who have children with disabilities. The goal is to examine the process and lessons learned for clinical trainees and their mentors from such a process. This is a case study conducted as community-engaged action research by participant-observers involved in the Cornelius community for the past 4 years. The authors include faculty members and clinical trainees of the Oregon LEND Program at the Oregon Health & Science University, families with children with disabilities in the community, and city officials. It is a critical case study in that it studied a community engagement process in one of the poorest communities in the region, with an unusually high population of children with disabilities, and in a community that is over half Latino residents. Lessons learned here can be helpful in a variety of settings. Community engagement forum, community engagement processes, a debriefing using a seven-element feasibility framework, and trainee evaluations are key elements. A community engagement forum is a meeting to which community members and stakeholders from pertinent agencies are invited. Community engagement processes used include a steering committee made up of, and guided by community members which meets on a regular basis to prioritize and carry out responses to problems. Trainee evaluations are based on a set of questions to trigger open-ended responses. Lessons learned are based on assessments of initial and long-term outcomes of the community engagement processes in which families, community members, local officials and LEND trainees and faculty participate as well as by trainee participant-observations, end of year evaluations and trainee debriefings at the time of the initial community assessment forum. The thesis that emerges is that community engagement processes can afford significant opportunities for clinicians in training to develop their leadership skills toward improving maternal and child health for minority families with children with disabilities while building capacity in families for advocacy and facilitating change in the community.

Keywords

Community evaluationCommunity engagementMaternal and child healthDisabilitiesLeadershipPolicyMinority communities

Introduction

When parents receive a diagnosis that their child has a disability, they face many challenges. The first is dealing with confirmation of their worst fears and wondering what life will be like. Second, they must learn how to navigate the maze that is the U.S. health care system. Third, they must live and work in a community that may present service problems, mobility challenges, or a lack of opportunities to participate in community affairs, a challenge discussed in this article. The challenges are often more severe for families from vulnerable and minority groups, especially for those with limited incomes or with linguistic and cultural barriers who face problems of access or unequal treatment within the health care system [13]. Making their voices heard in the community may be unthinkable to many families who may feel marginalized or may be unaware of avenues for civic participation [47].

Health care professionals, local government officials, and culturally diverse families with children with disabilities, however, may find unforeseen opportunities through partnerships promoted through a community engagement process in responding to the challenge of community inclusion. Communities that lack substantial fiscal resources and infrastructure can find that these families are valuable community resources who can support the efforts of the city to improve infrastructure and services and can encourage community involvement [8]. Families with children who have disabilities can find that their local leaders are most interested in working with them and far more approachable than the parents knew. Clinicians in training may learn to improve care from family-centered, community-based, culturally-responsive perspectives and develop leadership skills to promote systems change to enhance the well being of the children and families with special health needs. This article is a case study of one such community engagement process. Its purpose is to address two questions: How does the process work? Can this kind of process help to develop leadership skills in policy among clinical trainees and their clinical mentors?

This project has been carried out as community-engaged scholarship with the participation of families, local government professionals, trainees, and faculty for 4 years in Cornelius, Oregon. The purpose was to create an opportunity to connect clinical experience to a community-based setting in which families with children with special needs could elucidate the challenges they experience in the community. The community forum was initially undertaken by the Oregon Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program, Child Development and Rehabilitation Center (CDRC) of the Oregon Health & Science University. The project has continued with the active involvement of LEND faculty and trainees under the leadership of a community-based committee of which the authors are members. The LEND Program was created by the Maternal and Child Health Bureau of the Department of Health and Human Services in 1963 for the purpose of training health professionals to become leaders in promoting systems change to improve maternal and child health. There are currently 39 LEND programs nationwide which are anchored on four objectives:

(1) advancing the knowledge and skills…in developmental disabilities; (2) providing high quality interdisciplinary education that emphasizes the integration of services from state and local agencies and organizations, private providers and communities; (3) providing health professionals with skills that foster community-based partnerships; and (4) promoting innovative practices to enhance cultural competency, family-centered care, and interdisciplinary partnerships. [9, p. 1].

Community-engaged scholarship is often undertaken as “action research” [10] in which participant-observers in an activity seek to learn about a phenomenon and to engender action to address problems identified [11]. Community-engaged scholarship includes members of the community directly affected by those problems [4, 5, 12, 13]. While any case study comes with cautions, this is a critical case study in that the challenges are so significant that if lessons can be learned here, they may be particularly instructive for others [14, 15].

The thesis that emerges is that community engagement processes can afford opportunities for clinicians in training to develop their leadership skills toward improving maternal and child health for families with children with disabilities. The article sets the context in which the challenges arise, describes the community engagement process, considers the follow-on activities in the community, and identifies lessons learned for clinical trainees and their mentors.

Challenges for Families, Communities, and Clinicians

Day-to-day life for families with children with special health needs is often extremely challenging, and even more intense for some families from minority communities. For many of them, the care and services they require may be difficult to access and ordinary life activities pose burdens of which others are unaware [16, 17, see generally 18]. Some of these barriers are the product of a history of discrimination based on race and ethno-culture as well as disability. In some instances, discrimination is overt, but in most cases it is largely unseen and relates to attitudes and stereotypes.

Efforts to dismantle that sad legacy of racial discrimination have not erased the problem or its effects on quality of care, disparities in health outcomes, and full community participation [3, 6]. Although civil rights statutes and judicial opinions have barred official discrimination, the legacy continues [14, 1922]. Its effects on the quality of life of minority groups include economic disparities, inadequate housing, educational challenges, and food insecurity [23] as well as social stressors such as exclusion, isolation, environmental justice problems exposing them to environmental toxins, and mistrust of health and social services [2, 4, 19, 20, 24, 25]. Minorities often have had low rates of participation and even less representation in key government positions and in decision-making processes, contributing to alienation from the community and its governance.

The legacy of discriminatory treatment and exclusion of persons with disabilities adds its own set of consequences to racial discrimination. The U.S. Supreme Court has never applied the same criteria used in judging cases of alleged race discrimination to disabilities [See e.g., 26, 27]. While Congress has developed legislation such as the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA), the effort to ensure statutory protections has not solved problems that come from attitudes and stereotypes. Given that for so long persons with disabilities seemed to be all but invisible to others in society, it is easy to understand why they may believe that the community is not interested in their involvement. It is against this background that community engagement processes can be critical as a means to educate clinical trainees and their mentors by involving them in a community-based, participatory process that allows the voices of historically excluded groups to be heard and translated into action toward addressing health disparities [47, 2830].

Description

The Community Engagement Process in Cornelius, Oregon

The Oregon LEND Program launched a community engagement process in Cornelius, Oregon in March 2006. This process is one with central elements that can be used in a variety of contexts, but it is also important to be aware of the particular context [13, p. 7, 24].

Cornelius, Oregon: A Community on the Cusp of Change with a Host of Challenges

Cornelius, a small rural town of 11,000 residents, is located west of Portland, Oregon. Proudly calling itself “Oregon’s Family Town” (El Pueblo de las Familias), it is a community that parents describe as a good place to live and raise a family, including for Latino families who represent over 52% of the population. That said, it is the most economically challenged city in Washington County (the third wealthiest county in Oregon), depending primarily on agriculture and a modest number of small businesses. The Oregon Community and Economic Development Department has categorized Cornelius as a “severely distressed” community [31].

Cornelius has sometimes been viewed as a drive-through community for residents of two larger and rapidly growing communities, Forest Grove and Hillsboro. Oregon State Highway 8, which runs through the center of the city, carries some 40,000 vehicles a day, posing significant problems for persons with disabilities, particularly those with mobility challenges, seniors, and families with small children. For economic reasons and by virtue of cultural traditions, many residents of Cornelius walk a good deal and must cross busy streets to access schools, businesses, the health care clinic, city buildings, and public transportation despite a lack of pedestrian crosswalks. This complicated set of social, environmental, and economic factors interact with, and affect each other [4, 21, 24].

In 2000, Cornelius had the highest rate of poverty in the county at 15% compared with Washington County at 9.5%, Oregon at 13.5%, and the US at 13.2% [32]. Its child poverty rate is also one of the highest at 18.7% in the county [31, p. 122] compared to Oregon’s 17% [33]. Although families who live in Cornelius have many strengths, they are afflicted by health challenges with significant high rates of disability at 24.5% with much higher rates for some age cohorts. In contrast, Oregon’s rate of disability is 13.7% and the US 13.9% [34, p. 90].

In spite of recent changes in Oregon health coverage policy, there remain families who do not qualify for services. Even when they qualify, various types of medical assistance and support services are not available or parents may lack knowledge of how to access them. It is a reminder of the challenges of access to care that the community’s medical clinic, Virginia Garcia Memorial Health Center, was named for a 6 year-old girl who died in 1981 because she could not access health care. The clinic was started by community members at a garage.

By the time the community engagement process was undertaken, a variety of factors opened the door for change. There had been a dramatic turnover in the political leadership and professional management team in the city. The local Catholic church, led by a priest dedicated to families with children who have disabilities and encouraged by a parent who saw the needs, had recently started a monthly mass in Spanish, specifically intended for those families, which became a vital venue for communication and cooperation (for a discussion on the role of “Houses of Worship” in vulnerable communities, see [35, p. 396]).

The Community Engagement Process

What is a community engagement process? The Institute of Medicine, the Centers for Disease Control and Prevention, the Maternal Child Health Bureau, and the National Institutes of Health have supported community-based participatory research (CBPR) and community engagement processes aimed at developing leadership skills among health care professionals using a family-centered, culturally responsive approach to reach out to minority and disadvantaged communities as well as those affected by disabilities in the identification and solution of problems affecting them [10, 13, 29]. A community engagement begins with a forum in which stakeholders–community members, health professionals, and government officials–participate. In preparation for the forum, LEND faculty, with assistance from the Community Accessibility Center, CDRC, publicized the event through bilingual letters sent through the schools, pertinent community agencies, and providers of services to families with children with special health care needs. Due to time constraints, this forum was conducted in 1 day, 9 a.m. to 3 p.m., although its two major sessions can be organized into two separate days. Every aspect of the forum was offered bilingually.

The initial community forum took place at St. Alexander’s Catholic Church one surprisingly cold and snowy morning in March 2006, attended by families, LEND faculty and trainees, and community leaders. The location was a significant factor for an existing group of parents with children with disabilities who saw the church as a respected, safe, neutral, and familiar community centerpiece. The morning session was dedicated exclusively to the families who, through a bilingual facilitator, responded to two questions: (1) “what are the strengths of the communities?” and (2) what are the challenges families with children with disabilities encounter in your community in health, education, housing, public places, recreation, transportation, and employment? [28, 36]. The facilitator asked families whether they wanted to focus on one or all seven areas; families chose to explore all seven. Although the families began with describing many positive qualities that they saw in the city, it quickly became evident that there was much to be done, starting with the fact that there were many mobility challenges in the community for persons with disabilities and anyone else using a walker or a stroller. Families were then asked to prioritize the most critical challenges.

The families’ assessment was followed by a lunch conversation in which families, trainees, mentors, and others had a chance to interact informally. During lunch, two trainees prepared a synthesis of the morning session, the strengths and challenges of the community and the priorities selected by the families.

Thereafter, the families and trainees were joined by local officials and service providers. LEND trainees then presented a summary of the families’ community assessment as well as a community profile, e.g., demographics and relevant data, which previously had been prepared by another trainee. This session allowed service providers and officials to respond to the prioritized challenges families experience in the community. This was aimed at clarifying the problems and determining action steps to address them. The group decided that a steering committee was necessary and families insisted that it “start in the next few weeks, not the next few months.” LEND faculty members and trainees joined with city officials and families to establish a steering committee.

Assessment

Not Just Another Event: The Follow-on Community Activities

In a community too often visited and left behind, this process would be the beginning of a partnership intended to continue and support change. At the initiative of community members, a first task was formalizing and naming the steering committee: “Cornelius Committee: A Vision of an Accessible Community”/“Comité de Cornelius: Una Visión para una Comunidad Accesible.” It is the community’s committee through which families, LEND trainees and faculty, city officials, and community professionals have worked together to accomplish a series of goals set by families over the past 4 years.

Advocacy Development for Families with Children with Disabilities

Families have plunged into advocacy skill development–policy advocacy and empowerment advocacy [37, pp. 11–12]. At the first committee meeting, a mother of a child who uses a wheelchair raised the issue of lack of sidewalks to promote his mobility and independence. The group then moved to engage families in building community support for city efforts to address mobility challenges through sidewalk improvement projects, evidence of reciprocity [12]. Their efforts included 904 letters of support and testimony to assist in city grant applications for infrastructure improvements.

Committee members wanted to educate policy makers in the city and other jurisdictions about accessibility challenges. Members decided to make a video on the topic–from writing the script to doing the demonstrations and interviews for the video. While the video was in development, a committee member testified in Spanish at the Metro Council, the regional government, in support of a city proposal for the construction of sidewalks. At the end of her testimony, she invited Council members to take a wheelchair tour of Cornelius, and Councilor Robert Liberty accepted. His visit attracted media attention, while his difficulties in navigating around town on a wheelchair were captured in the video. The experience motivated him to write an article entitled, “Rolling a mile in another man’s wheels” [38].

Parent Training and Education

Another activity that followed from the engagement was a series of parent education programs. Families expressed the need for help in disciplining children with disabilities. The LEND faculty and trainees offered a training session on Positive Behavior Systems, and later, at parents’ request, a session on “Friendships, relationships, and independence issues for adolescents with disabilities.” This year, due to the economic recession and food insecurity, a session on nutrition addressed a variety of nutritional concerns for children with disabilities, based on the results of a survey prepared by trainees. All of the sessions provide cultural interpretation and bilingual, English/Spanish, supporting materials.

Families discussed in committee the difficulties they had in obtaining materials on disabilities in Spanish. In response, LEND faculty and trainees prepared a “Parents’ Resource Notebook on Disabilities”/El Cuaderno de Recursos para Familias con Niños con Discapacidades on a variety of conditions and syndromes. Copies have been distributed to various public agencies, schools, libraries, local clinics, and local churches. Trainees also created a multilingual website on disabilities with links to print and video sources in multiple languages (See: http://www.ohsu.edu/oidd/LEND/multilingual_resources/index.html).

Inclusiveness in Cultural Celebration: “Empowerment Advocacy” in Practice

The Day of the Child/Día del Niño, a Latin American tradition dating back to 1925, was created to recognize and celebrate children. To foster community cohesion and mitigate racial tensions, Centro Cultural initiated such a tradition in Cornelius in 2000. However, families with children with disabilities expressed concern over the unintended accessibility challenges. Committee members contacted organizers of the event who invited families to participate in planning meetings. While organizers viewed the event as open to everyone, a mother, who was hesitant to participate, asked a LEND faculty member who was interpreting for her, to convey the message that, unless “children with disabilities” appeared on the then finalized flyer, “I will not feel that my child will be welcome.” However, the interpreter encouraged her to express it herself, and she did. Immediately organizers understood the mother’s perspective, and had the flyer redesigned with the suggested statement and picture of a child on a wheelchair.

For the past 3 years, representatives of the community committee, LEND faculty, and trainees have been involved in efforts to support inclusion of children with disabilities in this important community celebration that attracts a crowd of over 3,000. Thus, family members persuaded organizers to change an event that previously had not engaged families with children who have disabilities to an event whose theme that year became “Different Abilities, Equal Rights/Diferentes Habilidades, Iguales Derechos.” LEND faculty and trainees and parents have worked to develop partnerships for supporting activities at the event with faculty and students from nearby Pacific University [8, 39].

Interdisciplinary Seminar in the Community: Families as Experts

For each of the last 3 years a panel of families and city officials have offered a community engagement seminar for LEND trainees. The last 2 years, the seminar has been held at Centro Cultural, the community center, inviting trainees and faculty into the heart of the community to offer insight into the challenges with which families contend from family-centered and community-based perspectives, in contrast to hospital-based clinical practice. The community efforts continue.

Lessons in Leadership and Policy Process: from and for the Trainees and Their Mentors

While the Oregon LEND curriculum stressed challenges families face, the community engagement process has provided trainees and their faculty mentors a unique opportunity to develop a more inclusive and in-depth understanding of issues affecting families in day-to-day living in the communities where they live often disconnected from clinical settings. It is one thing to talk about family and community challenges in the clinic and the classroom, but another to go to the community, learn from families and local officials, and engage in the change effort [29, p. 98]. Lessons have been learned regarding the organization and preparation for the initial community engagement, from the event itself, and the follow-on work.

These efforts are part of leadership development in the Oregon LEND program. LEND trainees usually come to the program with a solid start in leadership skills in the clinical/professional context and with respect to social skills, but rarely come with training in public policy, law, or management [40]. Few have had opportunities to develop those skills in a community setting. The Oregon LEND curriculum offers a range of activities to address these aspects of leadership for system change in maternal and child health of which the community engagement effort in Cornelius has become an important part.

Lessons on Preparation for the Community Engagement Process

The lessons for trainees began even before the initial community engagement event. Trainees were “astounded” by the amount of planning required to facilitate a successful engagement with the community. Such issues as child care and the needs of families to meet the care requirements of their children with disabilities made the planning and logistics of any event challenging for them. While much attention is necessarily focused on the child with disabilities, trainees also saw the problem of care of siblings.

Even the challenge of finding an accessible and adequately supportive venue was a vital lesson learned. While St. Alexander Church was an appropriate site, it lacked a wheelchair accessible restroom. An ADA accessible restroom has since been installed. This year, the CDRC Center on Self-Determination and LEND worked with the church to install a ramp to allow persons with mobility challenges access within the church.

Lessons from the Day of the Community Forum through the Eyes of the Trainees

Participation in the community engagement forum presented trainees with a wealth of “teachable moments.” It required trainees to be flexible and act creatively to provide for the individual and collective needs of families. They learned about challenges and strengths in the community, in the families, and in themselves. LEND trainees noted:

I observed a breakthrough when the parents who were there were able to take control and voice their opinions about the disparities they encounter. I think it was very empowering for them to have a forum to voice their concerns.

I enjoyed watching parents connect with each other and learn from each other’s experience.

Although it had not been planned, trainees and LEND faculty spontaneously pitched in to help with hospitality duties. In helping to serve lunch to the families and service providers, trainees had the opportunity to engage in a way that allowed a connection even though the majority of them lacked the language ability to converse. This community-based activity afforded trainees to open a lens into the daily world of families, a lens unavailable in a strict clinical setting.

Whether communicating with individuals or with the group as a whole, many found it particularly challenging to participate in an activity where they were unable to either speak or understand the primary language of most participants.

It was very [emotionally] difficult to listen as mothers or fathers told their stories of the struggle to access support. Parents spoke with such passion and emotion, one could feel their frustration. The language barrier, however, left many of us impatiently waiting for translation and feeling powerless to comfort or assist.

It was an interesting dynamic being in a position where I felt everything was being interpreted for me [italics in original], instead of for the parents I’m working with.

It was instructive and extremely valuable to experience this as one who did not speak the language of the majority of people present.

Although one of the LEND objectives is “Promoting innovative practice models that enhance cultural competence,” the role reversal in which trainees had to depend on interpretation gave them new insight into the obstacles for families with children with complex health needs who have to figure out how to navigate a complex health care system with multiple specialties. As important, trainees witnessed the empowerment of families as the forum afforded them an opportunity “to voice their concerns.”

Debriefing with Trainees Through the Feasibility Framework

At the end of the day-long forum, trainees and LEND faculty participated in a debriefing session. Barriers identified by parents were reviewed, using the seven elements (technical, legal, fiscal, administrative, political, ethical, and cultural feasibility) of the Cooper & Vargas Feasibility Framework [19, 24]. This activity required trainees to integrate the wide range of issues, discussions, emotions, and challenges. They had to consider policy problems, legal questions, cultural and ethical challenges, and management issues, as well as the personal and clinical issues presented. Families and local officials seemed willing to engage, but, for the trainees, determining how to integrate the complex elements and move forward even as they felt the emotion of the day was a learning experience. This continues to be a struggle for clinicians whose focus may be primarily on the clinical setting, distanced from the social determinants of health [21] or the subjective experience of families in community contexts.

Trainees unanimously expressed a desire to provide “follow-up”, or some type of ongoing assistance to the community, largely due to the openness of the families who were uniformly willing to communicate their needs despite their uncertainty as to whether those needs would ever actually be addressed. Several families shared stories of well-meaning attempts at intervention and assistance that had failed to produce any change. A trainee noted:

I think that the day has given the community an outside resource to help motivate and move things forward. For us, this means a responsibility to respond to the needs of the community, and (I think) to forge an on-going relationship.

The Ongoing Relationship and Activities

LEND trainees and faculty members have returned to the community and remain active participants in the steering committee. The challenges and learning opportunities continue. The challenges of language endure for trainees who find themselves in the position of families who come to a clinic, revealing the complexity language adds to the challenges of governance in the community even as the cultural and linguistic diversity offers a source of richness and strength. As one trainee expressed:

I realized how much of a language gap there is within the community. I knew that many people in Cornelius speak Spanish, but I did not realize the extent to which the communication breakdowns are occurring in Oregon. If it is already difficult for families to find the resources that already exist, then adding a language difference to the equation ignites this problem to new and much greater proportions…In addition, it must be so hard for families who speak a language differing from their providers, to ask questions and to advocate for their families.

That is evident in other contexts, also. In response, all committee meetings and work, including the writing of this article, are conducted bilingually.

Work with the community committee, support for the video project, and community infrastructure development programs, have taught interesting lessons about public policy, law, and advocacy, as well as language and culture. For example, after the media attention of the wheelchair tour of the city and development of the video on access issues, Tri-Met, the regional transit agency, offered funds for enhanced cross-walks at key locations only to be blocked by the Oregon Department of Transportation based on concerns about impediments to traffic flow.

Other lessons were learned indirectly. When it came time for one of the families to appear before Metro Council, there was a challenge translating the witness forms and finding a qualified translator who could assist the family before the council. Then there was the question of supporting families not accustomed to trusting or engaging with public officials from the city and other governmental bodies. And all of these endeavors were just to support the city’s efforts to build sorely needed adequate sidewalks and pedestrian infrastructure [8]. Trainees have watched, listened, and participated as the city has worked to build trust and enhance communications with the families it now clearly sees as resources for community support, rather than just one more group making special demands [5, 12].

Trainees learned that the efforts to ensure that an inclusive Day of the Child required an ADA inspection of the park where the event is held and thereafter the provision of accommodations to ensure mobility and such obvious needs such as accessible restroom facilities. The process of making the video also taught that while some families could get their vans to the parks, youngsters might still be unable to access them because of lack of pads for vehicle wheelchair lifts or sidewalks to reach play equipment. The trainees and families participated in discussions led by City Planning Manager about the need he had seen to do ADA assessments of parks and recreational facilities–assessments recently included in the City’s adoption of a new Parks ADA Transition Plan 2009.

With each passing year, the projects and challenges are different. This year the committee, city officials, trainees, and faculty worked to address interest in nutrition and feeding issues. In the course of preliminary discussions, it has become clear that nutritional issues are not just clinical, but concerned with the need for system change that will enhance communication, coordination, education, and service delivery among clinicians, parents, and schools. While LEND trainees presented a parent nutrition session, it is clear that the related policy and management dimensions of leadership are also called for in the effort.

Lessons for Trainees from a Work-in-Progress: Community Engagement Processes

Reflecting on their experiences upon exiting the LEND program, trainees have highlighted the significance of the community engagement forum, identifying it as the “most important” activity in which they had participated during their fellowship. They came to the program expecting to build on their clinical skills–and they did–but they also discovered aspects of leadership training they had not expected. This process has allowed them to experience barriers to community access first-hand, away from the hospital setting. Many reflected on the experience of facing a significant language barrier for the first time.

Trainees also recognized the application of lessons learned during this experience to their professional practice, noting the importance of clinicians stepping outside of the clinic in order to gain a better understanding of the real-life barriers experienced by families.

I learned that it is very easy to slip into your daily routine and forget how families turn up at your office for an appointment. There is immense work and coordinating and referrals, etc., needed to get children where they need to be and receiving the services they need. I feel that being up at OHSU we are at the end of the road for parents trying to receive [a] diagnosis for their children and we forget how much they’ve gone through to get to this point.

Families have a LOT [sic] they need help with, and after hearing all they deal with, I know I would find it difficult to find out who is the right person or agency to talk to. Solving their problems is a big challenge. I also learned about the migrant worker program… where families will get funded if the father works in agriculture for 30 h/week, but if they don’t work in that field, they are [out of luck] for funding. I think that’s highly unfair. Besides, with parents working 30 h a week, they need to find childcare, but how can they afford it if they are getting paid min [minimum] wage?

Many have reflected in the end of year evaluation that they would have liked to have had more time during their fellowship to commit to community engagement. A recent graduate stressed that:

There should be more community engagement away from the hill [hospital setting] for trainees to learn about health disparities, realize barriers encountered by families in various areas, such as child care [and] transportation. It is a more accurate assessment of a community, which cannot be done in a hospital setting.

Lessons on the need to include cultural interpretation and linguistically adapted materials can make a difference in the quality of life of families and their children, yet this is still a barrier for families who are searching for information on the disability of their children in their native language.

Conclusion

The Cornelius community engagement process has been anchored in reciprocity based on respect and trust, “equal voice and disclosure,” and “informed consent” [4, 12]. The partnerships have fostered “the conditions in which community groups, rather than outside experts, can determine and get the health agenda and then act effectively to help transform their lives and the life of their community” [4, p. 5]. The relationship of the families, the community, the committee, and the LEND program has been mutually beneficial as is the intent of CBPR [12, 13]. For LEND, it has been a process of developing leadership skills to advance community building toward “a more just and caring society” [21]. A trainee summarized the value of the effort in a way that makes a fitting conclusion for this article:

The community engagement process allows clinicians to learn about how it is to live and work in a family with a child with disabilities and how interactions with professionals don’t always address the needs of the family. In a clinical setting it is easy to control for or forget the real-world challenges that accompany a family with a child with significant disabilities. Logistic and environmental challenges cannot be learned in a sterile clinic. The community engagement process provides clinicians with the opportunity to learn how to interact with families and to provide services that the families need and not necessarily what the health system tells them what they should need. True health reform is meeting the needs of the patient and not making the patient meet the needs of the provider.

Although understanding the connection between clinical work and community engagement to health and wellness in children with disabilities still poses significant challenges, this set of processes has provided significant lessons in leadership and policy. A major lesson in this area has been the need for basic empowerment and developing effective policy and advocacy skills in families with children with disabilities. Equally important has been the insights gained into the perspective of families from diverse racial, ethno-cultural, and linguistic backgrounds. For LEND programs whose principles include advancing family-centered, culturally competent, and community-based care, community engagement can be a useful model for trainees to learn that these principles apply to all families with children with disabilities, including those from diverse backgrounds. In spite of a series of obstacles to implementing community engagement processes–cost, time, effort, clinical demands–it is a model that can facilitate “community-based partnership in health resources and community leadership” [9, p. 1] and provide insight into the multiple obstacles families with children with complex health care needs encounter in the communities where they live, work, and play. As the Institute of Medicine asserts: “the next generation of prevention interventions must focus on building relationships with communities, and derive from the communities’ assessments of their needs and priorities” [37, p. 15].

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© Springer Science+Business Media, LLC 2010