*CHP Archives: PROMISING PRACTICES IN COMMUNITY DEVELOPMENT FOR BOARD INCLUSION

PROMISING PRACTICES IN COMMUNITY DEVELOPMENT FOR BOARD INCLUSION: NYS DEVELOPMENTAL DISABILITIES PLANNING COUNCIL’S PROMOTING LEADERSHIP OPPORTUNITIES DEMONSTRATION PROJECT

February 2000 to February 2001

Cheryl Spear and Esther Kabuga
Technical Assistance and Resource Center (TARC)
Center on Human Policy
Syracuse University
805 South Crouse
Syracuse, NY 13244-2340
August, 2002

The preparation of this report was supported in part by the National Resource Center on Community Integration, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037, and through a subcontract with the Research and Training Center on Community Living, University of Minnesota, supported by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133B980047. Members of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position of NIDRR and no endorsement should be inferred.


TABLE OF CONTENTS

 


Acknowledgements

The development and production of this Best Practices Report would not have been possible without the contributions of many. First, we owe a gratitude of thanks to the funding source for the Promoting Leadership Opportunities projects. Thus, we thank the New York State Developmental Disabilities Planning Council (DDPC) for their vision for inclusion and, their support to each project to carry out this mission. Then, thanks must go to all the Project Coordinators who supplied us with a rich source of information in order to bring this document into fruition. Without their voices, this Best Practices Report would not exist. As well, we are indebted to the Center on Human Policy staff for the on-going support and encouragement we receive from them. Their names must not go unmentioned-Rachael Zubal-Ruggieri, Debbie Simms, Cyndy Colavita, Pamela Walker and Bonnie Shoultz.

Chapter One
Introduction

In spring of 1999, the New York Developmental Disabilities Planning Council (DDPC) announced a Request for Proposal (RFP) for Promoting Leadership Opportunities for Persons with Developmental Disabilities demonstration project. The intention of this grant was to increase the number of individuals who serve in leadership roles on policy boards and planning committees of community agencies and organizations based on the innovative model developed by Capabilities Unlimited in Cincinnati. Of those that responded by sending proposals to the DDPC, eight projects all over the upstate New York area were funded to promote board inclusion. They included:

  • The Arc of Orleans County at Albion
  • The North Country Center for Independent Living (NCCI) at Plattsburgh
  • The Access to Independence and Mobility (AIM) Independent Living Center (ILC) at Corning
  • The New Horizons Resources Inc. at Poughkeepsie
  • The Western New York Independent Living Project Inc. (WNYILP) at Buffalo
  • Allegany Arc at Wellsville
  • The NYS Institute on Disability (NYSID) at Troy
  • On Board, at the Center on Human Policy, Syracuse University (This project was funded at least a year earlier than the other seven projects)
What is Board Inclusion?
Board inclusion is a process of promoting true participation of persons with developmental disabilities in decision-making bodies like boards and committees.
The Purpose of Board Inclusion

Board inclusion enhances community representation of persons with developmental disabilities-a strong community taps the strength of every one of its members. Besides, many persons with disabilities are interested in being involved in community organizations in a leadership capacity and they have expertise, assets and experience to contribute to their communities. Of utmost importance is the fact that persons with developmental disabilities need to be part of the bodies that make policies that affect them. The process of including persons with developmental disabilities in decision-making bodies of community organizations assists those community organizations to improve their overall ability to understand, support, and include persons with disabilities in their communities. Furthermore, by undertaking this process boards act as constructive agents for change, thus challenging the status quo.

Four Major Phases of the Board Inclusion Process

According to the RFP there are four major phases to board inclusion:

Phase One – Community Development

Community development refers to a set of planned interventions by the participating community organization to induce positive structural changes in their community through citizen participation. The process involves equipping all concerned with the necessary tools to improve their community. Activities that were carried out included sending out surveys and other outreach mailings to local decision-making groups, hosting workshops at local self-advocates’ conferences, and conducting meetings with agency directors and board presidents.

Phase Two – Consumer and Organization Selection/Matching

Selection and matching involves bringing together as a TRIAD, persons with developmental disabilities, mentors, and board representatives to participate as partners within respective community agencies. Some activities that were carried out in this phase included sending out surveys and other outreach mailings to self-advocates; ongoing identification of interested individuals and organizations; development of individualized selection and matching criteria; and assessment of support available through each decision-making body.

Phase Three – Training

The training phase involves creating a training environment for TRIAD members that will enhance their knowledge of the following: developmental disabilities culture; accommodation needs; board etiquette; Robert’s Rules of Order; and so forth. Some of the activities carried out in this phase included developing training curricula; inviting guest speakers; creating interactive group activities; and role-playing.

Phase Four – Technical Assistance

The technical assistance phase involves assisting organizations in making materials and meetings accessible to persons with disabilities; assisting organizations as they help support people and board members to learn about their roles; and assisting organizations in the areas of recruitment and transportation, as well as to overcome any barriers to inclusion that may exist. This phase of the project should continue long after the person with developmental disability commences participation on a board or committee. Some of the activities in this phase included making regular follow-up visits; creating resource materials; making board presentations; and providing telephone consultations with respective boards.

While working with the Person-Centered Transition Planning Resource Center at Cornell University, the DDPC had learned the value of providing funds to an outside program to offer technical assistance and support to a group of related projects. The Person-Centered Transition Planning Resource Center at Cornell University was set up to do the following: provide training for project staff; assist the projects in developing curriculum and training materials; assist the projects in developing relationships and identifying and initiating systemic change; facilitate information sharing and provision of technical assistance for grantees; identify, compile and disseminate identified “Best Practices”; serve as a resource for those who wish to have information on the programs; and to assist projects in identifying and implementing strategies to continue project funding upon the cessation of DDPC funding.

The Technical Assistance and Resource Center (TARC) at Syracuse University

Following the selection of the eight Promoting Leadership Opportunities (PLO) demonstration projects, the DDPC announced the availability of funds to set up a technical assistance and support resource center to coordinate and support these projects. The Center on Human Policy at Syracuse University was successful in securing this grant. As a result, TARC was set up. The TARC staff is comprised of the program supervisor, Bonnie Shoultz, and two project coordinators, graduate students Cheryl Spear and Esther Kabuga. Some of TARC’s responsibilities are to:

  • Regularly schedule cluster meetings
  • Conduct site visits and meetings with individual projects as needed
  • Organize and carry out quarterly telephone conferencing
  • Coordinate data collection
  • Implement individualized technical assistance plans for each project
  • Maintain a resource lending library
  • Set up training workshops for the projects
  • Collaborate with two statewide organizations representing people with disabilities and community human service agencies
  • Assist projects in working with organizations, e.g., human service agencies, youth groups or church boards
  • Identify, compile and disseminate “Best Practices” on the different phases of the project

This promising practices report is the first “Best Practices Report” and represents the community development phase of the PLO project. At the end of the first grant year, a Community Development Best Practices questionnaire was developed by TARC and sent out to the eight project coordinators in the form of a questionnaire. Responses were primarily gathered by means of self-report in reaction to the questionnaire. TARC’s project coordinators assembled and analyzed the information, then organized it into a collection of promising practices.

The Best Practices Report questionnaire was divided into various segments of the community development phase. These segments were then organized into eight chapters and an introduction. Each chapter concludes with a summary of what TARC project coordinators perceived as key strategies for future practice specific to each particular phase.

Chapter Two
Pre-launch Activities
Definition: This refers to activities that were carried out or measures that were put into place before the actual outreach.

Pre-launch activities include any measures that were put in place or events that were carried out by participating agencies before commencing actual outreach to the outside community. Our general observation was that project coordinators and agencies that were already well established in the community in terms of networks and affiliations had the easiest time laying groundwork for the PLO project. This was especially true of projects that already had experience working with persons with developmental disabilities.

The project coordinator for Arc of Orleans County put together a team of strong trainers upfront. As a pre-launch activity she also secured the endorsement for the project from the executive director and other members of the staff of her agency who had a community focused mindset. She did this in order to garner support for the project, which she felt “fit the agency’s mission of community involvement by persons with disabilities.”

The realization that other community members have the experience, knowledge and willingness to participate in the integration of persons with disabilities into the community is a fundamental one. Not only does it foster responsibility on the part of community members but it also ensures that a project like this one has longevity and can continue long after the funding is gone. Across the board, project coordinators involved various agency staff as well as members of the community in their pre-launch activities. Two words that seem to sum up these kinds of pre-launch efforts well are networking and canvassing.

The project coordinator for the Promoting Youth Leadership Project at NCCI seems to have utilized networking and canvassing. He gathered support by involving agency staff, parent advocates and other local community members in the generation of ideas on how to carry out the mission of the project. Informational meetings and presentations were also organized for local Developmental Disabilities Services Office (DDSO) counselors, Special Education teachers, and Commission for the Blind and Visually Handicapped (CBVH) counselors.

In a way, projects like this operate like a spinning wheel. In order for all tasks to be sufficiently accomplished, all parts of such a wheel must fit together and complement each other. The project coordinator for AIM ILC understood that without the contributions of other departments within her agency, she and her staff could not carry out her project’s goals of inclusion. Therefore she coordinated with her agency’s auto transportation program to meet the needs of consumers. Securing transportation upfront solved a problem that was a barrier for most of the projects. It acted as an incentive for consumers to participate in the project. One other project coordinator, understanding that her agency deserved first-hand information about the PLO project, took steps to design a brochure and distributed it throughout the agency.

Two agencies, the Allegany Arc and On Board, facilitated the formation of an advisory board and a task force on board inclusion as a foundation to their projects. These advisory bodies made decisions, discussed the issues about the project, and participated in the subsequent outreach activities. Two years before On Board was funded, a community Task Force on Board Inclusion was formed. It sent out a survey to agencies in Central New York about their willingness and needs for support to include people with developmental disabilities on their boards. This task force then decided to have the Center on Human Policy apply for funding for the project. Allegany Arc developed an agency advisory board consisting of agency staff, self-advocates, program staff, and administration to facilitate training and transportation needs. Likewise the project coordinator of this project conducted what we considered as an informal internal survey “with any staff member who had outside community involvement to consider approaching that organization about involvement” with PLO.

Future Key Strategies:

  • Begin the project by creating awareness internally through information sharing.
  • Seek internal endorsements from all levels of management and staff.
  • Identify and mobilize all resources that are available from all persons and departments within the organization.
  • Identify community networks and affiliations that the project coordinator and other staff may have that could be useful to the project.
  • Create “a mailing list for not-for-profit agencies…” [Capital Leaders Project].
  • Gather support and ideas from agency staff, community members, parent advocates and other provider agencies.
  • Organize task forces or teams within the organization that will be responsible for guiding and monitoring the progress of the project.
  • Evaluate your organization’s strengths and deficits in carrying out the project and seek to make up for the deficits.
  • Strategize the outreach phase of the project and prepare all outreach materials.
  • Submit periodic proposals for conferences like the statewide Self-Advocacy Association.
  • Look to agencies with representation of persons with disabilities on their board for examples.
  • Build a basic resource library at your agency.
  • Set up fiscal record-keeping system for the project.
  • Make presentations about your project at central agencies such as the DDSO, Committee of Executive Directors, Staff of Independent Living Centers, New York State Independent Living Council, Inc., self-advocacy groups, etc.
  • Set up a simple listserv for agency and community members.
  • Put project information on agency website and make website address available to others.
  • Always remember that other community members often have the experience, knowledge and willingness to participate in the integration of persons with disabilities into their communities!

If a majority of these key strategies are put in place, transitioning the project into the next phase of outreach should be a relatively easy process. Not only will the community organization be geared up internally, but necessary and valuable contacts will have been established in the community. These preparatory steps will allow project coordinators to tap organizational resources for carrying out outreach activities as well as to have the necessary support in doing so.

Chapter Three
Outreach

Definition: Outreach is the process of getting the word out or creating awareness about the project. In addition, it describes the important connections made following the pre-launch phase.

Beyond their pre-launch activities, PLO Project Coordinators (PCs) had to think about their next crucial steps. Issues that surfaced during the outreach phase included effective strategies to make connections with diverse communities and their members. Thus, one challenge involved providing education and resource materials for interested community members. For example, the PC of Arc of Orleans County began her outreach efforts by first using her position as a community leader to connect with other community leaders within her “close-knit rural area.” She solicited their support and participation for the PLO project. As this project coordinator noted, connecting to her peers “produced positive responses” as did her community leadership roles, which included running a Day Habilitation program and her position as secretary of the Chamber of Commerce.

PCs used other effective strategies to connect to their target organizations. Knowing that involvement with the local school district officials would be a bureaucratic process, the NCCI PC decided to go “directly to the schools.” He said, “We met with school administrators and teachers to inform them about the project. Once we had a teacher to help in a specific school, mailings were sent to parents. Then, they met with various classes to tell them about the project.” For this coordinator of NCCI, outreach efforts continued with the distribution of information leaflets handed out and mailed to those interested. As noted, this PC’s efforts resulted in securing “sufficient referrals of students to fulfill the project goals.”

Encouraging and preparing outside community agencies to get involved were notable outreach strategies embraced by the PLO PCs. To be sure, the prospect of getting agencies to envision and participate in the project of board diversity called for an array of approaches. For instance, the PC of Access to Independence and Mobility (AIM) felt encouraged to focus her attention on public relations activities. In this respect, she placed announcements in local newspapers, newsletters, and service clubs (e.g., Lions Club & Rotary Club). Specifically, she felt that she could reach local community members and agencies through placing notices with “human services agencies” as well as “within their agency’s own newsletter.” As well, the PC “featured [the project] on an AM Radio talk show…”

To take the public relations activity a step further, the PC of Leading the Way from WNYILP engaged various members of her community in frequent dialogues, seeking and gathering information through planned presentations and workshops on inclusion and community membership at local conferences and agency staff meetings. She also engaged her listening, and we might add, invisible audience(s) through “interviewing with the Independent Perspective radio and TV shows.” Like the PC for AIM, this PC gave particular attention to reaching large audiences through “public service announcements and press releases.” Specifically, “surveys were mailed to 220 local not-for-profits working with people with developmental disabilities. Mailings went to policymakers…traditional agencies for persons with developmental disabilities, planning councils…and cultural and consumer organizations.”

However, Allegany Arc took a different route to reach community members. The PC incorporated what we believed was a team approach. For instance, he “sponsored a Speak Out for self-advocates.” As well, he brought staff together to sponsor a full day of training for community organizations with Capabilities Unlimited, a private non-profit organization committed to the inclusion of all people, with or without disabilities, to reach their full potential in their communities. One other outreach activity that was used by several projects was an informal community brunch to promote increased interest in leadership opportunities for persons with developmental disabilities. In keeping with standard outreach strategies used by agencies mentioned above, Allegany Arc reached out to community members through “newspaper announcements, radio, and surveys.”

Another PLO project, On Board, presented the project to a placement consortium (a consortium of supported employment agencies). They also conducted outreach through the creation of a newsletter. As well, the Capital Leadership Project made presentations at the “State Rehabilitation Council, DDSO Advisory Council…New York State Independent Living Council, Inc.” Another form of outreach, undertaken by the Capital Leadership Project, was “announcing the project at the NYSID website.” These avenues of outreach served to expose their project and increase potential participation.

Future Key Strategies:

  • Start your outreach by talking to community members and organizations that you regularly associate with.
  • Solicit ideas for outreach from members of the community and other agency staff.
  • Solicit consumer and board participation through surveys.
  • Utilize formal and informal referrals to solicit host boards and consumers.
  • Encourage the participation of community members and organizations through public relations activities (e.g., informal community brunches).
  • Utilize regular media outreach (e.g. local radio and television, local newspapers, community organizations’ newsletters, community notice boards, and local and statewide organizations’ websites).
  • Make your outreach efforts through media that is generally accessed by the target consumer population and providers.

Chapter Four
Cultivating a Cultural Role Model

Definition: An organization’s explicit efforts to adjust any skewed values, norms or practices toward persons with disabilities that might exist in its daily operations. These efforts may include confronting any prejudices, stereotypes or biases toward persons with disabilities.

 

Organizational culture is perhaps the greatest barrier to inclusion as it often presents prejudices and negative attitudes that act as barriers to the integration of persons with disabilities. Organizational culture can be described as the working structure of an organization, or simply put, the way things are done in an organization. It encompasses the shared beliefs, values, norms and practices that are operating both consciously and unconsciously within an organization.

In order for an organization or community agency to cultivate a cultural role model, it must first examine the existing culture and then initiate changes toward the desired culture. Deliberate steps must be taken to adjust skewed values, norms and practices by forming a fresh, common vision and direction, developing objectives on how to achieve that at various levels of the organization, modeling behavior that supports the new vision and continually dialoguing within the organization. This desired culture then serves as an example to other community agencies.

In asking the question about how to cultivate a cultural role model, TARC assumed that agencies working with people with developmental disabilities would work to demonstrate behaviors and actions that focused specifically on issues of inclusion. In the community development phase of the PLO project, different agencies carried out different activities to cultivate cultural role models.

At least half of the projects included persons with developmental disabilities on their own board, a strategy for role modeling inclusion. Many projects reported having purposefully engaged interactions with persons with disabilities. Additionally, agencies made available positions on their boards and board designated committees so that persons with developmental disabilities could participate in their decision-making processes. Several agencies became involved in awareness raising forums, informational forums, conferences, workshops, and team meetings that dealt specifically with persons with developmental disabilities and those issues and concerns relevant to the integration of these persons into their communities. Notably, a majority of the projects enabled people with developmental disabilities to participate in activities that have typically been out of their reach (e.g., decision making and leadership).

In an effort to model inclusion, the project supervisor of On Board helped to form a community Task Force on Board Inclusion comprising members with various disabilities. On Board also utilized a man with a developmental disability as a consultant to the project on a weekly basis. The first PC had a good relationship with a co-trainer, who is also a person with a disability and staff member at the Center on Human Policy. Additionally, On Board involved staff from a statewide organization, Grassroots Regional Organizing Program, in the Task Force On Board Inclusion. The On Board project staff also attended self-advocacy meetings and conferences on a monthly basis. Recognizing that transportation is a major barrier to community development, some members of the On Board staff are currently working with other members of the community to improve the transit system.

The NCCI’s Promoting Youth Leadership project involved high school students with disabilities in a variety of community interactions. These included the classroom, the Government Center, hospitals, the YMCA, the Cart Bus and other local community settings.

Clearly, Allegany Arc took seriously the responsibility to model inclusive behavior. This agency sought to increase consumer participation and voice internally through the development of an agency advisory board. This board “assisted and attended all community forums.” The project held bi-weekly meetings, which allowed for training and guest speakers to interact with all project participants.

The PC from WNYILP role modeled for her agency the idea and practice of teamwork and empowerment. She did this through providing an opportunity for the program participants to use negotiating, fundraising, and organizational skills as they solicited monies for their graduation ceremony.

At the Arc of Orleans County persons with developmental disabilities were routinely involved in decision-making processes (e.g., participating in interview teams for hiring Arc staff). The day habilitation program at the Arc of Orleans County provided consumers with volunteer opportunities in the community. These opportunities for volunteerism provided excellent experience for future board and sub-committee involvement.

The NYSID recognized the need to acknowledge consumers as the focus of their project. Rather than going through other organization staff to outreach to consumers, NYSID marketed their project directly to the individuals with developmental disabilities. Moreover, NYSID developed a handbook “which boards can use as a training tool.”

Future Key Strategies:

  • Do not be afraid of initiating organizational change.
  • Be the cultural role model for your organization and community.
  • Be an advocate for persons with disabilities and encourage your organization to do the same.
  • Encourage purposeful interaction between the organization and persons with developmental disabilities.
  • Empower the consumers to participate in activities that were previously out of reach for them (e.g., interviewing incoming agency staff).
  • Think beyond the project and initiate inclusive behavior that extends beyond the lifespan of the project.
  • Involve other community members in the efforts to cultivate a positive cultural role model.

Chapter Five
Keeping the Community Connected to the Process of Inclusion

Definition: This refers to the ongoing active process of maintaining regular contact, listening and providing feedback between the host board, project participants (students), and other community members and organizations.

An ideal community development initiative is one that has longevity and ongoing enhancement. Community initiatives keep the community connected to the goals of inclusion through regular contact, listening, and provision of feedback. This contact must be active rather than passive. PCs need to constantly find new ways to keep the community committed to the goals of inclusion.

On Board kept the community connected through a newsletter and a website devoted specifically to the project’s activities. Follow-up telephone calls to organizations and interested individuals were made on an as-needed basis. In order to obtain more community feedback,On Board has added new community members to the Task Force on Board Inclusion.

The Capital Leaders project at NYSID opened up their training to mentors and community members so that they could understand how best to work with board members who had developmental disabilities. The project leaders also spoke at various community events, and handed out a flier about their project to various agencies. The leaders of this project realized the need for open dialogue with community members and members of agency boards and committees. During the community events that they attended, they deliberately asked open-ended questions such as, “What are your concerns about having a person with a developmental disability on your board of directors?” These types of questions led to productive discussions about the importance of inclusion; possible accommodations for board members with developmental disabilities; and support that the project could provide to the host board.

The WNYILC made it a point to maintain open dialogue both within their agency and with the external community. Telephone calls; bulk mailings of the project’s cover letter, survey, and brochure; press releases to TV, radio stations and newspapers; and interviews about the program were some of the ways this project used to keep the community connected to the goals of inclusion.

The Arc of Orleans County appreciated that the community could only be kept connected by being actively involved with the project. In this endeavor, the PC “kept the majority of the responsibility in the hands of the consumers and their mentors” but met with them monthly to problem-solve. The PC made telephone calls “to assure communication on the date and time of future meetings” so as to use this as an opportunity to “ask how the match is going from the matched agency’s point of view.”

The NCCI recognized the importance of face-to-face meetings with the community members. They organized such meetings with schools and other community organizations. Additionally, handouts and mailings were done at the beginning of the project. For more far-reaching connections, a message board was launched on the Internet to enable youth with disabilities to dialogue about leadership with other youth nationwide. NCCI hopes to soon launch another community message board to facilitate discussions about inclusion in organizations. At the onset of their second year, NCCI developed a survey that would be completed by participating students and teachers to give their input as to how the project should proceed. Advice on how to direct the project was sought from DDSO counselors, teachers and parents on an ongoing basis.

AIM understood that consumers must first and foremost be satisfied with the program before the external community could be evaluated. As such, they conducted focus group meetings to assess the progress of participants throughout the training period. A pre-test and post-test was administered to assess participants’ progress. Feedback questionnaires and evaluations were completed by students after each training session to assist the PC to improve future training sessions. During the training sessions, participants were also asked for suggestions and improvements they might find helpful.

Future Key Strategies:

  • Talk with project participants (students) to determine their needs, experiences and desired outcomes.
  • Use multifaceted methods of seeking information from, and providing feedback to the community.
  • Perform regular telephone or face-to-face follow-up with participants, host boards and support persons to provide accommodations and evaluate quality of placements.
  • Use questionnaires and evaluations to obtain feedback from project participants and other community members.
  • Encourage open dialogue and address any concerns that board representatives might have about the participation of a person with developmental disability on their board of directors.
  • Involve mentors and other community members in the training sessions in order to help them understand how best to work with persons with developmental disabilities.
  • Be creative!

Chapter Six
Successful Outcomes

Definition: This section focuses on a quantitative overview of reported community connections as well as relationships secured with the target population (e.g., it reflects each agency’s aggregate number of agencies contacted or number of consumers recruited).

Within the first year, PCs, their staff, and consumers had begun to create solid plans of action that would positively shift barriers within their projects. For example, barriers common to projects like time and budgetary constraints, inadequate transportation access, and lack of community education about disability in general served to threaten the efficacy of PCs’ vision. How PCs found ways to shape their projects constituted a major success that has implications for the future. For example, PCs found creative ways to make activities happen in spite of time pressures particularly for most coordinators who worked part-time. Additionally, they stretched monetary resources to fit conservative budgets. As well, they helped to raise community awareness about the gifts and talents of persons with developmental disabilities, thereby helping to minimize negative attitudes. And finally, they secured transportation from various resources to get participants to and from project activities as they brought the Community Development phase into focus.

To that end, successful outcomes described within this report reflect a quantitative overview of established community relationships rather than a qualitative analysis. Such a qualitative analysis, we believe, can only be made after PCs have had time to settle in with their projects. In such case, Community Development, the first step in the PLO process, included the number of agencies project leaders contacted when utilizing the most common outreach strategies; the number of people recruited at different points within this phase; and the aggregate number of people who participated in the individual projects (service providers, mentors and persons with developmental disabilities). Examples given below show this quantitative focus:

In the case of On Board, they report having worked with 28 individuals with disabilities in 2000 and 14 individuals with disabilities in 2001. They also identify making contact with 42 providers in 2000, and 55 in 2001. “Six individuals with developmental disabilities have been included on boards or committees.”

The Promoting Youth Leadership Project at NCCI, while intending to work with more than one school, has “successfully interfaced with one high school” in their community. In this school environment they report having “established a strong relationship of mutual trust and respect.” The efforts of NCCI’s PC have resulted in the recruitment of 15 students. Furthermore, this recruitment has opened the door for these students with disabilities in multiple community organizations. The PC emphasizes: “students have undergone leadership training and participated in community organizations such as the YMCA and Club Adrenaline, a local teen establishment. Our students have shown varying degrees of leadership by conducting meetings with school administrators, planning field trips, forming and running their own clubs, and participating in local organizations. ”

For Leading the Way, “of the 220 agencies solicited we received a 10% return.” Thus, this PC was successful in “making contacts with 20 agencies and securing commitments for 11 students and two guest participants in class activities.” AIM, another PLO, reports that they “canvassed [a total of] 60 agencies.” As well, they “graduated 8 individuals of the initial 11 candidates.” Also, AIM was successful in placing 4 of their 8 graduates on boards or county legislative committees.

Within the Arc of Orleans, they report that their agency has “six of the initial eight participants actively attending meetings within their matched agencies.” Furthermore, this agency’s PC reports these placements resulted in “a great deal of satisfaction” for the participants.

The Capital Leadership Project also reports contacting large numbers of community members about their project. For example, they made presentations about the project to over 45 directors of human service agencies and Independent Living Centers.

Chapter Seven
Major Barriers Successfully Overcome

Definition: This is a description of challenges and potential problems that were satisfactorily overcome by different Promoting Leadership Opportunities projects.

When PCs wrote about the barriers that were successfully overcome, they used a qualitative tone. They described both challenges and problem-solving strategies used. For example, On Board faced a barrier that was common to all agencies: securing transportation for students with developmental disabilities to attend ongoing trainings. To solve this problem, On Board received a supplemental transportation grant from an outside source in their first year. To meet the second year’s expenditures for transportation, On Board budgeted directly through their DDPC (Developmental Disabilities Planning Council) grant. In addition, the On Board staff, along with members of the Syracuse community, remained active in working with transit system officials to seek improvements in public transportation schedules, thereby increasing overall access to persons who do not drive. Similarly, the Capital Leadership Project says, “our problem experienced was transportation. Two participants received transit tokens to defray the cost of using mass transportation, and transit system.” In order to get all students to meetings and trainings, students also traveled by taxicab.

Another barrier that was common to all agencies was the recruitment of mentors to support students with disabilities who desired to participate on boards. In attempting to solve this problem, AIM discovered several ways to solicit mentor participation. For example, they sought support both within and outside the agency. Externally, they sought mentors from volunteer organizations and from student learning and support centers at a local community college. Internally, they utilized AIM’s Job Coaching Service to act as mentors. Here, the PC gives important advice: “Provide clearly defined roles of the mentor and for the agency” and equally important, discuss “what the actual time commitment will be.” Finally she says, “get commitment up front.” Two other agencies, until they could find “natural supports” (i.e., friends, family members, or members of the board), utilized agency staff to provide this support to those students who would receive leadership training.

Aside from these two common barriers faced by project leaders (securing transportation and mentors), other problems that existed were specific to the particular agency. One troublesome barrier dealt with strategically was filling in for a PC who left the project without much notice. At this agency, “the Executive Director, ILC Coordinator, and the Staff Peer Advocate…work[ed] together on the project.” Another barrier cited by a good number of the projects was “getting agencies who agreed to participate to return calls…” Several solutions came about: (1) make face-to-face contacts, (2) establish a permanent contact person, and (3) send out self-addressed envelopes.

For NCCI, a barrier that continued to challenge them was moving through bureaucracies. They tell us that “one of the biggest challenges we faced was getting established in a school. Although everyone we talked to thought the project had merit and would benefit their school, we had difficulty finding teachers who would devote some time and effort to the project.” In order for NCCI to convince the administrators, teachers, and students of the importance of youth leadership training for high school students with disabilities, NCCI had to make the leadership trainings “available as a supplement to the education going on in the school setting.” In reporting the success of this strategy they note, “we have built a strong partnership with the high school and now have a team of youth who are beginning to show signs of commitment.”

The goal and challenge of NYSID’s Capital Leadership Project was to reach the greatest number of persons with developmental disabilities and agencies to participate in their leadership projects. NYSID explains, “It takes a lot to get the word out to every agency.” Thus, their strategy was to get the DDSO and the Self-Advocacy Association of NYS Inc. to help them promote the project. In order to raise awareness about community membership for persons with disabilities, PCs were required to make multiple attempts at problem solving since they realized that “agencies did not always understand what they were talking about.” Yet, PCs felt that their ideas and practices of inclusion would prevail. PCs held firm under barriers and produced successes knowing that progress made does in fact lose its forward movement and that new staff come and more often they go. They also courageously held firm knowing that administrations unexpectedly change hands, and so do policies and procedures, and that, allocations of monetary resources shift between unencumbered spending to a dry-up of funds.

Future Key Strategies

  • Be creative!
  • Create a line item in project budget for paying or sharing cost of transportation with student to help defray their expenses.
  • Establish a permanent contact person for all correspondences.
  • Make as many face-to-face meetings as possible.
  • Send out self-addressed return envelopes.
  • Make use of business cards.
  • Explain the role of the mentor, discuss time commitments, and get commitments for assigned mentors up front [AIM].
  • Design an accessibility checklist both for the organization carrying out the project and for potential host boards/organizations.

Chapter Eight
Lessons Learned

Definition: These are valuable lessons that could guide future practice and that have potential to be developed into best practices.

The inclusion of persons with developmental disabilities into decision making bodies within their communities is in itself a systems change process. The challenge to shift the current structure whereby decisions that directly affect persons with developmental disabilities are made without their participation and input is an enormous one. Following the community development phase of the PLO we became keenly aware that such a change in structure involves the re-shaping of the physical boards to include the presence of people with different abilities and the re-articulation of a philosophy that includes voices of all board members. These actions result in the development of a policy that reflects the new mission and evolving culture of the community organization.

Furthermore, the future of systems change depends to a large extent on the lessons learned by participants, project coordinators, community members, and other staff of community development agencies that are involved in this process. All the PLO PCs learned valuable lessons, which can guide future practice.

On Board learned that it is crucial for projects that are involved in systems change to stay connected with the community in as many ways as possible. On Board purposely made their connections with the community multifaceted. For example, the Task Force on Board Inclusion, mentioned elsewhere in this report, was successfully brought together. Staff members and parents were used as resources for getting the message out about the program. In order to chip away at the negative attitudes that organization staff and volunteers still have towards people with developmental disabilities, On Board chose to engage in continuous dialogue about attitude change. On Board reported that, although they have not overcome this problem, they learned that persistence is the key.

During the first grant year AIM ILC had relied on activities such as putting up notices, creating agency lists, and/or placing announcements in newsletters to get the word out about their project. These activities were hardly interactive with the community and/or consumers. From this, a valuable lesson was learned, namely that it is imperative to develop stronger community presence by engaging in interactive activities. AIM reported a desire to improve their approach during the second grant year. AIM realized that to accomplish this would mean extending their project beyond “anonymous” activities. It would mean making themselves visible as an agency for community interactions, and becoming identified as role models, educators, and trainers, and, more importantly, as community members. As the AIM PC noted in a self-report, “we would like to do more in the second year of our grant with board trainings on diversity and interacting with persons with disabilities.”

The coordinator for WNYILC learned the importance of employing professionalism and maintaining a high optimism in all phases of the project. She only saw possibilities rather than focusing on barriers and this guided the way she communicated to her agency’s staff, the consumers and the external community. Whenever TARC staff spoke with her, she only spoke of positive outcomes and possibilities. In this way, we learned from her that the PLO project was to be treated as professional business at all times. One of the ways she demonstrated her professionalism was through an intensive focus on publicity and public relations for the external community. She emphasized the importance of details such as the aesthetics on brochures and other stationery that was mailed out to the community.

The coordinator of NCCI emphasized two important lessons learned through his experience with the Youth Leadership Project. The first lesson NCCI learned was the importance of establishing partnerships with existing and long-standing institutional structures (e.g., the school district and the School to Work Program) in order to overcome bureaucratic barriers that might otherwise have hindered the project. Of equal importance, NCCI learned the virtue of flexibility in community development. They put this into practice by taking the project to consumers who were high school students in the School to Work program. In this program, participants were already gathered, and there were reduced barriers to participation. When the PC had tried to have the project operate from outside the school setting, students had shown unwillingness to use up their leisure time to participate in the program.

The PC of the Capital Leaders Project at NYSID paid special attention to the lessons she could learn from members of the Self-Advocacy movement. To this end, she reiterated the importance of gathering consensus for her training through small focus groups and conference workshops. Making use of dialogue with those community members who have already participated in the process of inclusion meant that she could stay connected to the “larger, more established organizations.” Necessary to achieving cohesion within Allegany Arc’s project was conducting “regularly scheduled meetings” and ongoing training for self-advocates through the VOICE Advisory Board. The success of their project also hinged on other educational forums with trained presenters from Capabilities Unlimited as well as maintaining consumer voice on their own board through the creation of the VOICE Advisory Board.

In keeping with the original intent of the DDPC RFP the PC for the Arc of Orleans County utilized the TRIAD method. Her approach helped to keep the training more specific and focused on the needs of the particular host board. She learned that making matches before beginning training is “absolutely CRITICAL.” In her own words,

Having a match gives an individual with a disability and the mentor a reason and focus for attending. All the agencies need to do is to agree to the concept and if possible supply a mentor. They won’t see the person until the training is over, so there is time to get used to the idea of a new person on the board, and make any necessary accommodations. The training is then more powerful as you review the mission not of some generic agency, but the one you will actually be working with. All examples can be geared toward the actual situation the person will be going into. It takes it out of the theoretical “someday when I find a board I want to be on” to “wow, I’ll need this next month when I start attending Literacy Volunteer meetings.”

Another approach that the PC for the Arc of Orleans County reflected upon was the level of community involvement from her own staff and even those not directly working on the project; she believed that her staff should be regularly involved with local community activities. She learned that self-advocates who volunteered in the community could gain “excellent experience for future board and subcommittee involvement.”

Overall, many lessons were learned about positive strategies and barriers to engaging effectively in such a community development effort. It was especially important for PCs to reflect on the lessons that they had learned because: this helped them to evaluate what their projects had accomplished; what still needed to be accomplished; what challenges they had successfully overcome; and what challenges still needed to be overcome. Hopefully, the experiences of these project coordinators will provide useful lessons to guide future practice. Furthermore, individuals and organizations that are involved in the process of developing their communities could replicate some of the strategies that these project coordinators found to be positive.

Future Key Strategies:

  • Intensive outreach and mobilization of internally available resources form a good foundation for the community development process.
  • The project must stay connected with the community in as many ways as possible.
  • Staff members, parents, and self-advocates are good resources for outreaching for the project.
  • Be persistent in lobbying for attitude change towards persons with disabilities.
  • Think beyond the confines of the project, seeking to initiate changes up to the legislative level.
  • A strong community presence is crucial for the success of the project.
  • Employ professionalism and maintain optimism in every phase of the community development process.
  • Entering into partnerships with established institutional structures and community organizations may help to overcome barriers and bureaucracies that might have otherwise been encountered.
  • Flexibility is necessary while carrying out community development.
  • Dialogue with organizations and community members who have already participated in the process of inclusion is helpful.
  • Utilize trained and/or experienced presenters who have experience working with persons with developmental disabilities.
  • Allow the project participants (i.e., the persons with developmental disabilities), to participate in the generation of ideas for the project.
  • Encourage persons with developmental disabilities to get involved in other community activities through volunteerism.
  • Matching the consumer to a specific board upfront allows for preparation to be more focused.
  • Working with fewer numbers at first seems more effective and provides better models for future community development initiatives.
  • Think long-term; think beyond boards and committees; think beyond the project’s lifespan.
  • Remember that the process of inclusion is long-term and it requires much sacrifice, time and resources!

 

Conclusion

Our goal in this report was to highlight critical strategies employed within the PLO. Keeping to this task, we reiterate those practices most often used by PCs. The TRIAD approach, mentioned within the introduction, was clearly DDPC’s preferred method for establishing inclusive practices of board participation for persons with developmental disabilities. If, in fact, groups of TRIADs could have been developed (i.e., bringing together, simultaneously, the consumer, mentor and board member) as one, then philosophical and practical standards for community inclusion would have been easily resolved. The TRIAD approach, we learned, required of PC’s unanticipated resources (e.g., like additional work hours, as well as, community supports) that made this approach difficult to implement.

Yet, what we have outlined here as options to the TRIAD approach, those practices taken on by individual PCs have been equally effective in increasing the presence of persons with developmental disabilities into community decision making bodies. Thus, PCs’ strong push for internal agency supports became the “foothold” for learning how to engage their communities. To that end, we have attempted to list future key strategies at the end of each chapter for consideration in moving one’s project beyond the pre-launch (internal) phase into that of the community outreach, education and response.

Outreach strategies taken up in Chapter three, were in part individually crafted. In this way, they were varied. As we cited throughout, face-to-face encounters proved most effective in bringing about community response. Also effective in getting the word out were public relations activities like bulk mailings, electronic communications (e.g., web-based developments), and radio and television presentations. Clearly, any one of these outreach strategies used in isolation would have proved ineffective.

PCs who were most effective during their outreach phase, we noted earlier, worked through apparent values, beliefs and practices, first, within their own agencies. Thus, they created what we have termed cultural role models for community awareness and inclusion. Critically, these agencies created spaces within their own boards or committees for those persons with developmental disabilities for whom the PLO project was meant.

Keeping the community connected to the goal of inclusion took several forms, one of which was reinforcing both pre-launch and outreach key strategies. Another was reminding host boards of their commitments to the goal and assisting consumers and boards with concerns for appropriate accommodations.

The phase we have just discussed (the Community Development phase) covers the span of a little over a year. We cannot yet address the quality or longevity of community relations established by project coordinators. Certainly, each step taken within the Community Development phase overlapped and thus, reinforced each project’s level of stability as they progressed. Thus, in year two, PCs will have achieved success as they complete the training and matching of consumers to community boards of consumers’ interest.

In closing, we would like to acknowledge that more effort has been made and continues to be made than was captured in this report. As the Chinese say, “the journey of a thousand miles begins with a single step.” This is to suggest that such an undertaking as the PLO project required a huge effort for changing attitudes, changing agencies’ cultures and changing systems. Therefore, many of the tasks that project coordinators attempted may not have been identified as best practices in this report and yet they were critical steps taken in laying the groundwork for future community integration.

APPENDICES

NOTE: There are several Appendices that we are unable to list online.

  • North Country Center for Independence Youth Leadership Project Flyer
  • Community Development Best Practices Protocol
  • Board Inclusion Resource List
  • On Board Fact Sheet: Resources on Building Inclusive Boards and Committees
  • On Board Survey of Decision-Making Groups
  • On Board Fact Sheet: A Curriculum for Learning to Serve on Boards and Committees
  • Western New York Independent Living Center’s Lead the Way Leadership Development Program Brochure
  • Promoting Leadership Opportunities for Persons with Developmental Disabilities Brochure, AIM ILC
  • Board Inclusion Brochure, Technical Assistance and Resource Center (TARC)
  • Allegany Arc VOICE Advisory Leadership Project Questionnaire Survey
  • VOICE Fact Sheet: About VOICE
  • Public Service Announcements, Western New York Independent Living Project, Inc.
  • “Tips to keep in mind when working with an individual with a disability,” NYS Institute on Disability
  • Job Description for My Support Person, NYS Institute on Disability
  • DDPC Leadership Training Schedule, Arc of Orleans County
  • Meetings Topic Schedule, On Board
  • Notes from Meetings #3 & #4: Questions to Ask Boards and Yourself Before Joining, On Board