Independent Living Services and Participation

Rural Americans with disabilities want to participate in community life. But to live independently they may need targeted services and local systems advocacy. Centers for Independent Living (CILs) were established to provide such services and to conduct advocacy activities. There are about 400 CILs, with about 700 offices across the country. About 85% of them serve a rural area.

Participation is emerging as the “gold standard” of outcome measurement in disability and rehabilitation. This emphasis on participation is tied to the contextual or ecological model of disability that suggests that level of participation is a product of the interaction between the individual with his or her environment. Unfortunately, while the concept of participation seems to be clear and understandable, very little research has been done to define the concept or measure it.

Links to Publications Available on UMScholarWorks:

Accessible Rural Housing Options: Mobile Homes and Manufactured Housing

Centers for Independent Living: Rural and Urban Distribution

Estimating the Cost for Achieving Universal Access to Centers for Independent Living

Extending the Independent Living Model to Rural Areas Through State and Local Efforts

Rural Independent Living: Model Outreach Strategies

Links to Scholarly Articles and Abstracts:

A Market-Oriented Strategy for Applied Research in Independent Living Rehabilitation

Assessing the Geographic Distribution of Centers for Independent Living Across Rural and Urban Areas: Toward a Policy of Universal Access

Teaching People with Disabilities to Recruit Help to Attain Personal Goals

Quick Links: Community Participation & Independent Living

Current Projects

  • Effort Capacity and Choice
    Participating in the community requires effort, and people vary in how much they spend before needing rest. As a result, everyone must make choices about what activities they spend their effort on. This project will study two interventions that look at the relationship between personal effort and community participation.
  • Improving Home Usability
    In order to live independently and participate in the community, a person needs a usable home. Previous research has shown that those with more usable homes participate more in their communities. This project will partner with two local CILs to build a Home Usability Network to support consumers to make home improvements.
  • Expanding the Availability and Quality of Rural Data
    In order to create effective policies and programs it is important to have data, such as demographic information and location, about people with disabilities in rural communities. It can be difficult to access rural disability data from the large data sets maintained by the federal government. To address this, RTC:Rural is partnering with StatsRRTC to conduct rural analyses of existing large data sets.
  • Exploring Rural Disability Onset
    In order to understand rural and urban differences in disability rates, we need to understand how disability evolves and what influences disability severity outcomes. If disability evolves differently in different places, these differences may provide insight into the nature and context of rural disability and may help inform interventions. This study will also examine how moving from an urban to rural area (or vice versa) can affect the disability experience.
  • Rural Resource Analysis
    The availability of community resources, as well as access to those resources, has a large impact on the experience of disability. Using community asset mapping and network analysis methodology, this project will identify the resources available in a community and then figure out how those resources are linked to each other and how individuals know about and access those resources. As well as examining local assets and networks, this study will also examine the relationships between community resources and disability rates across the U.S.
  • Personal Assistant Services (PAS) in Rural America
    Approximately 3 million people with disabilities receive paid personal assistance services (PAS) in the United States. For many, these services are critical for social and community participation. However, little is known about rural-urban differences in PAS delivery and consumption, and how these services influence community participation and health. This project is both an exploratory and intervention development project designed to address rural PAS outcomes for alternative models of service delivery.
  • Rural Transportation Options
    The lack of accessible public transportation is still a major barrier to employment, healthcare access, and other aspects of community participation for people with disabilities. Though public transportation barriers exist in both urban and rural places, there is a lack of knowledge about how people with disabilities access and use transportation in their rural communities. This project will begin to compile this knowledge through two different surveys.

Completed Projects

COMPLETED PROJECTS | 2013 - 2018

  • Ecology of Rural Disability
    Little is known about how disability emerges and unfolds for people living in rural areas. For example, how does losing employment affect a person’s physical and social wellbeing? Are people who live in relatively more accessible places more apt to engage in community activities once disabled? The ecology project will follow along a group of people over five years to examine how their physical, social and emotional wellbeing interact with the accessibility of their environment over time.
  • Geography and Rural Disability
    In order for policy makers to make decisions about resources and program development for people with disabilities, they must have accurate information. For example, many people think that when a person acquires a disability, they move to cities where more services are located. But, until recently, there has been no data to see if this is true. This project will use this data to see where people with disabilities live in order to improve services in rural communities.
  • Participation in Rural Events Among Young Adults with Disabilities
    In order for people with disabilities to take part in all areas of community life, events and event programs must be accessible. For example, many communities host county fairs but not all county fair sites and programs are accessible to people with disabilities. This project will take a look at communities in rural America to see if people with disabilities are able to participate in community events. This information will help policy makers improve accessibility to community life for everyone.
  • Person-Environment Fit
    People feel like they fit into an environment when they share similar goals and values to those around them. This project will use electronic diaries collected in real time to examine how a person’s sense of fit affects their participation in community life. Participants in this study will use a smart phone like device to record their feelings about fit as they participate in different activities.
  • Monitoring and Managing Community Accessibility
    The goal of this study is to create more opportunities for people with disabilities to take part in community life. Events will be studied to see if they are accessible. This information will be provided to planners and policy makers to help set community accessibility goals. Communities and events will receive an accessibility report card to build awareness of the need to make events accessible.
    •  

    COMPLETED PROJECTS | 2008 - 2013

     
    • Assess and Monitor the Distribution and Use of 5310 Funds between Rural and Urban Areas
      The lack of accessible transportation for people with disabilities in rural communities is a common problem. Without transportation, it is difficult to get medical care, maintain a job and participate in community life. This project studied the use of federal funding for accessible transportation and found that fewer dollars were spent in rural communities. Recommendations were made to policy-makers to address these problems.
    • Home Usability Networks
      While there is a great deal of research on the relationship between the environment and disability, there is less research on housing and how it affects the health and participation of people with disabilities. The goal of this project was to develop tools to assess whether or not housing is usable and to facilitate development of a local Home Usability Network to help people solve home usability problems.
    • Community Access from the American Housing Survey
      In 2009, the American Housing Survey included questions about disability to see if people with disabilities live in housing that is accessible. The data showed that many people live in housing with poor access and cannot easily enter or leave their homes. This lack of access can prevent people with disabilities from participating in their communities, accessing medical care or working outside the home.
    • Transportation and the American Time Use Survey
      The American Community Survey collects time-use data to study the ways in which people spend their time. People with disabilities have higher rates of unemployment than people without disabilities. This study looked at the ways in which people used their time and whether or not accessible transportation accounted for differences in employment. The goal of this project is to inform both policy makers and further research projects.

    COMPLETED PROJECTS | prior to 2008

     
    • Assess the Potential Involvement of Rural Faith-Based Organizations in Providing Community Transportation for People with Disabilities
      Some people believe that safe, accessible transportation for people with disabilities can be provided by faith-based organizations. This study found that these groups often didn't own vehicles or, if they did, the vehicles were not accessible or in good repair.
    • Develop and Evaluate a Voucher System for Increasing Access to Transportation for People with Disabilities Living in Rural Areas
      This project looked at transportation in rural communities and developed a voucher system to help people with disabilities find their own transportation. This system supported the independence of people with disabilities by allowing them to make their own decisions.
    • Evaluating Community Accessibility
      Accessibility to public spaces and buildings is so important to people with disabilities that it is a central feature of federal legislation, state regulations, and municipal ordinances. Despite its importance, however, there are no standard measures of infrastructural accessibility for making systematic comparisons across communities that could help guide efforts to increase accessibility.
    • Independent Living Services and Participation
      Centers for Independent Living (CILs) were established to provide services and advocacy for people with disabilities who want to live independently in the community. These centers provide a means to increase participation in life activities and many of them serve people in rural communities. This project focused on the services CILs provide that potentially increase consumer participation.
    • Leadership by People with Disabilities
      People with disabilities are leaders in disability rights and in their rural communities. Researchers found that, at the time of this study, over 85,000 people with disabilities served as elected or appointed officials and, as a result, developed information and strategies for becoming involved in advocacy work.
    • Rural Policy Foundations
      The New Paradigm on Disability specifically recognizes that social and public policy affect the opportunity and ability of individuals with disabilities to participate in their communities (NIDDR,1999). This research project conducted analyses of important disability and mainstream rural policy and developed a framework for analysis of existing and emerging policy.
    • Using Ecological Momentary Assessment to Measure Participation
      Ecological momentary assessment (EMA) methods can be used to evaluate participation as it occurs, across time and situations. Typically, EMA involves recording events and behaviors as they occur using a handheld device such as a personal data assistant, smart phone, or iPod. Real-time measurements allows for the collection of data on participation as it occurs rather than relying on participant recall.

    Products & Training

    • Infographics for Home and Community Accessibility in the American Housing Survey
      Two infographics based on data from the American Housing Survey give us a picture of the housing barriers that people with mobility disabilities experience.
    • Transportation Voucher System
      The Transportation Voucher System puts resources for transportation into the hands of individual consumers and trusts them to use their knowledge and skills and vouchers to organize their own transportation. A Toolkit for operating a program is also available.
    • Disability in America Map Series
      This is a set of maps that shows information about disability. The maps show the rates of disability for every county in the United States. There are maps for many topics, including veterans, poverty, and employment. There are also maps for different kinds of disability including hearing, seeing, walking, cognitive, self-care and independent living. These maps were created from information collected through the American Community Survey.
    • Advocacy Skill Building Toolkit
      This toolkit has everything you need to lead interactive workshops to introduce and teach advocacy skills to youth with disabilities. What makes this toolkit unique is its use of improv, an engaging way to build communication skills and introduce youth to the world of advocacy.

    External Resources