Building Capacity for Full Community Participation (R-11)
CILs Build Capacity to Promote Community Participation for Consumers with Disabilities
Why It Matters
For people with disabilities, community participation improves their well-being and satisfaction with life. But too many people with disabilities are not happy with their level of their community involvement. Even though the U.S. has increased support services for independent living and made progress toward deinstitutionalization, people with disabilities still encounter many barriers to being active in their communities.
This research project works with centers for independent living (CILs) to reduce the barriers to participation for people with disabilities. The goal is to make it easier for consumers to take part in volunteering, working, going to school, and other activities that interest them.
Centers for independent living have been leaders in creating changes that improve the consumer independence. Core service areas for CILs include advocacy, independent living skills training, information and referral, peer counseling, deinstitutionalization, and, most recently, youth transition.
In addition to these core services, CILs may also be able to increase their consumers’ community participation by helping to make change in their communities. The purpose of this project was to increase the CILs’ ability to make changes that increase participation. We call this “building capacity.”
To understand how well this worked, our researchers tracked the CILs’ activities over three-and-a-half years. We paid attention to how the CILs responded to their consumers’ needs in the community, how they reduced the barriers to participation, and the impact of the changes they made.
This project gives CILs tools to address barriers to transportation, jobs, affordable and accessible housing, and other areas of community participation. These tools are methods for creating community-level changes in systems, programs, policies and practices that affect community participation. Staff members from partnering CILs received in-person training and monthly technical assistance calls to support their efforts to bring about change.
The training curriculum is based on the Community Tool Box, an internationally known online resource that provides information on essential skills for community change and improvement efforts. CILs also used an online tool called the Community Check Box (CCB). The CCB helps community groups document their work and provides them with real-time data to guide their efforts for change. It was developed by the Work Group for Community Health and Development at the University of Kansas, and has been used since 1990 for local, state and national initiatives.
The CILs used the CCB to track and make sense of their activities. This project is the first time the CCB has been used to help disability organizations improve community conditions for consumers.
CIL staff enhanced their ability to make community changes by learning more about these topics:
- Analyzing Problems and Goals
- Developing Strategic and Action Plans
- Developing an Intervention
- Increasing Participation and Membership
- Advocating for Change
Nine CILs in five states collaborated with us on this research project:
Federal Region VI
- A Resource Center for Independent Living, Austin, TX
- Spa Area Independent Living Services, Hot Springs AR
- SOURCES for Community Independent Living, Fayetteville, AR
- Mainstream Independent Living Center, Little Rock, AR
Federal Region VII
- Resource Center for Independent Living, Osage City, KS
- Prairie Independent Living Resource Center, Hutchinson, KS
- Southwest Center for Independent Living, Springfield, MO
- The Whole Person, Kansas City, MO
- League of Human Dignity, Council Bluffs, IA
CILs documented the community changes and community actions that they initiated in the online CCB system. A Community Change (CC) is a new or modified program, policy, practice, or environmental change in the community that the group helped to create. A Community Action (CA) is any action that leads up to a community change, like gaining permission from the city.
Other kinds of activities were also documented, such as providing services and building internal capacity within a CIL.
These examples from our partners show the variety of community changes they made to promote community participation:
- One CIL led advocacy efforts that resulted in longer crossing times at downtown crosswalks, making crossing safer for all residents.
- Volunteers for a Day of Caring Ramps Project donated their time to build ramps for veterans, supported by Home Depot and a local radio station.
- A school held a Disability Mentoring Day for students to learn career development skills from local organizations and business mentors.
- Sensitivity training was offered for city bus drivers, which included the drivers riding the bus while secured in a wheelchair. This led to a new, safer practice for tying down wheelchairs and a commitment to holding the sensitivity training annually.
- One group convinced their local Health Department, nearby Universities, and the state to add disability-related questions to annual surveys that assess community needs. They also collaborated with the Planning Commission to distribute surveys so responses were not limited to those with internet access.
- A Job Coordinator piloted a program with some schools to implement transition plans for students with disabilities. After several years of success, larger schools in the area agreed to be a part of the program.
- What is the CCB? The Community Check Box is an online system that initiatives, coalitions, and other groups use to track their accomplishments and visually display progress towards community changes. The system helped CILs organize their efforts to build capacity and increase community participation.
- What is it not? It is not a CIL management program to track individual consumer outcomes.
- How can it help my CIL? Having up-to-date information allows the CILs to organize, filter and graph progress. This is useful to stakeholders and funders, and CILs can use it internally to adjust their goals and achieve greater outcomes.
“There is a need to bridge the gap between qualitative and quantitative data so that the difference the CIL is making can be made explicit. [You] must be able to describe what you are doing to funders and why it is working better than the person in line behind you, who also wants funds.” – CIL Participant
CILs are currently operating in a difficult climate, without adequate support to make ongoing, far-reaching community changes. Although the CILs in this project created strong strategies for making community changes, most slowed their rates of making change during the research time period. A variety of statewide and national factors affected the amount of time, resources, staff, and services that CILs could devote to building their capacity.
Some CILs did benefit from increased or new sources of funding, increased staff and collaboration with other organizations. But others experienced loss of funding, loss of staff or leadership, increased numbers of consumers needing services, and other events that made it difficult focus on community change.
CIL participants noted these problems during the research project.
“It’s hard to get out and do new stuff when you’re trying to hang on to what you’ve got.”
“The reason why the outreach activities have decreased is not because we don’t have a need to do outreach, but because we are spending our time giving direct services. [We feel] Frustration with serving consumers while at the same time trying to build a long-term focus. It is really difficult with limited resources."
They also commented on the value of the Community Check Box to their work:
“[I can] envision using the data to see where activities were high and which need bolstering in the future.”
“[I] could envision using the site to become more familiar with what [the CIL] has accomplished in the past, which will provide guidance for what to do in the future.”
Our goal is to help CILs build their capacity to promote community changes, so that people with disabilities can participate more fully in their communities. To do so, we will:
- Share our findings with policymakers who can recommend and implement changes to improve community participation.
- Share our findings with the two national organizations that represent CILs, the National Council on Independent Living (NCIL) and the Association of Programs for Rural Independent Living (APRIL).
- Support additional funding for CILs.
- Disseminate promising practices for community participation through our Center. "Your Action Planning Guide for Promoting Full Community Participation Among People with Disabilities" (PDF available upon request).
- Success Story
- Fact Sheet
- PowerPoint Presentation (PDF)
- Research Participant Powerpoint (PDF)
More information about the design of the research:
Methods, Sample, Design, Data Collection and Measurement, Data Analysis
Project Investigators: Glen W. White, PhD, and Jerry Schultz, PhD