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Children and Youth with Special Health Care Needs: Emerging Leaders

Kim Brown

In October 2012, the Rural Institute Transition and Employment Projects started work with Children's Special Health Services (CSHS) at the Montana Department of Public Health and Human Services (DPHHS). Through the contract, project staff are increasing the capacity of CSHS to support children and youth with special health care needs (CYSHCN) to transition successfully into adulthood. Activities include recruiting foster care and CYSHCN representatives for the Rural Institute Consumer Advisory Council; developing and providing four webinar trainings on topics related to the transition needs of CYSHCN; expanding the Montana Transition Listserv to include CYSHCN partners (hospitals, specialty and regional clinics); disseminating health care transition-related information via the Montana Transition Listserv, the Transition and Employment Projects website, and other websites; and developing and disseminating a health care coverage guide for families and youth.

Core Grant: Montana UCEDD

Marty Blair

The Montana University Center for Excellence in Developmental Disabilities Education, Research and Service engages in research, provides education and interdisciplinary training, and develops model services that improve the skills, abilities, quality of life and satisfaction of people with disabilities in rural communities, their families and those who serve and support them. Since 1978, The University of Montana Rural Institute has worked to improve the quality of life of Montanans with disabilities and those who live in any of the 32,000 rural communities across the country. Institute initiatives focus on promoting independence, productivity, integration and community inclusion in rural and frontier communities. Through our many projects and programs, we seek to increase the knowledge and awareness of consumers, service providers, professionals, policymakers, and the general public by disseminating information that results from our training, research and service initiatives. Our basic operating philosophy is that we are consumer-responsive, family-focused, and sensitive to the cultural heritage and values of people with disabilities and their families by developing appropriate procedures and practices. The so-called "core" grant provides effective and efficient administrative and programmatic support to assist faculty, staff and students in meeting the Rural Institute mission.

Effort Capacity and Choice: Investigating a Dynamic Model of Participation

Andrew Myers

The Rural Institute for Inclusive Communities, the Bureau of Business and Economic Research and the New Directions program within the Department of Physical Therapy and Rehabilitation Science at the University of Montana propose a collaborative project to investigate the behavioral economics of effort and participation.
   
People with disabilities participate in most aspects of community living at lower rates than people without disabilities. Rehabilitation researchers and practitioners have made significant progress in conceptualizing and measuring participation, but the value of these static measures is unclear for understanding how personal factors (PF) and environmental factors (EF) affect the choice to participate (WHO, 2001). The complex interaction of PF (e.g., physical conditioning) and EF (e.g., bathroom design) may be reflected by the amount of effort it takes to participate in community life. We endeavor to extend our understanding of this interaction using a mixed methods study derived to examine a behavioral economics model of consumer choice and participation. First, we will conduct a quantitative study of two interventions aimed at reducing the effort required for community participation. Then, we will conduct a series of qualitative interviews to deepen our understanding of effort and participation.
   
We propose to randomly assign study participants from a population-based sampling frame into either a physical activity intervention to increase personal effort capacity, an environmental intervention to decrease the effort-cost required for bathing or a control group. We will use ecological momentary assessment (EMA) to measure in situ effort and participation before and after the interventions. The EMA will have participants respond to brief (< 2 minutes) surveys eight times per day for one week about their current activity and effort required for the activity. Quantitative data analysis will focus on both traditional between subject outcomes of the experimental design and within subject analysis of variation in perceived effort and participation within and across days of the measurement period. In the qualitative study, we will use grounded theory to investigate how effort is associated with a broader range of PF, EF and choices to participate.
   
We anticipate results of this study will begin to illuminate how both environmental and personal factors affect participation through their impact on perceived effort. Indeed, with these results, we will continue to build an economic model of disability and participation that begins to specify the relationship between effort capacity, effort cost and participation choices. Development of this model will further rehabilitation and community living research and practice by providing a framework for helping individuals with disabilities and providers choose interventions that can improve participation outcomes. Knowledge translation activities will be tailored to consumer, practice and research audiences.

Healthy Community Living

The Healthy Community Living (HCL) project sprung from a grant to improve people's health by providing support, health promotion, education, and opportunities for people to succeed in reaching personal goals.

To help teach people how to reach their goals, we are creating two classes, Community Living Skills and Living Well in the Community, to guide people in learning skills.
    
These classes will encourage people to explore skills for community living online and in person with peers and allies.
    
As part of the project, we are creating a national public photo database which will show people, with and without disabilities, doing things in their community. We hope this database will portray people in an authentic way and demonstrate some of the skills and situations needed for people taking the classes.

Agencies Collaborating on the work of the project:
State / Local Social Services -- Centers for Independent Living
Consumer / Advocacy Organization -- APRIL (Associated Programs for Rural Independent Living

Home Usability Project-PICL

Lillie Greiman

The University of Kansas and the University of Montana received a Rehabilitation Research and Training Center to Promote Interventions for Community Living (RRTC/PICL). The Center goals are to promote community participation outcomes for adults with physical and multiple co-occurring disabilities, living in the community or transitioning from nursing facilities to the community. Our objectives use a person-environment fit model to investigate evidence based, multifaceted interventions that target change in both individual characteristics and environmental factors to support enhanced community participation. Our research approach starts with a systematic literature review on multifaceted community-based interventions and progresses to a single research project involving three studies: (a) Development and refinement of our Out and About intervention, teaching problem solving and goal setting to support community participation, (b) Efficacy Study 1 using RCT to study the impact of the Home Base intervention to empower consumers to self-assess their home environment and to provide support to enhance their home usability, and (c) Efficacy Study 2 investigating the impact on consumers receiving both interventions, on their community participation. The research supports significant time from Center for Independent Living staff members and advice from our Scientist-Consumer Advisory Panel throughout our research and KT activities. Outcomes will be measured quantitatively and qualitatively and will include: 1) increased usability of consumers' homes, 2) increased health and reduction of secondary health conditions, 3) personal goals achieved, and 3) increased participation in the community. Products will include: 1) Systematic review, 2) National Community Living Resource Center, 6 or more peer reviewed publications, 3) Guide for assessing home usability, 4) webinars, and 5) internet web sites.

Living Well with a Disability

Tracy Boehm

(Fee for service)
Living Well is ten week wellness workshop for people with disabilities that helps participants achieve full participation through health maintenance and health promotion activities.
When appropriate, individuals are encouraged to consider health behavior as one tool for increasing participation.  Individually chosen goals are the centerpiece for building skills in healthy reactions and communication, managing depressed mood, seeking information, physical activity, nutrition, advocacy, and maintenance of healthy living habits.

Participants report improvements in outlook and positive changes in daily activities, such as new employment, returning to school, or more active social lives.  Many participants report the session on systems advocacy as their first exposure to disability rights advocacy.

Individuals who participated in Living Well also report less limitation due to secondary health conditions and reduced health care costs.

Working well with a Disability represents a line of research that translates our work in health promotion to the vocational arena.  Access to health-promotion programs is limited for many people with disabilities due to employment, financial, and insurance barriers. The most prevalent secondary conditions reported by VR consumers with physical disabilities include fatigue, physical conditioning problems, sleep problems, chronic pain, depression, eating or weight problems, and anxiety.  Many of these conditions are associated with worse employment outcomes for the general population and people with disabilities.  Fortunately, health promotion programs can reduce limitation from secondary conditions and may reduce work-related health issues such as employee absenteeism and health care utilization.

 (http://livingandworkingwell.ruralinstitute.umt.edu/)

Working Well with a Disability

Tracy Boehm

(Fee for service)

Working Well with a Disability is a six-week peer-facilitated health promotion workshop that considers health in the context of employment. The course tailors its information to individuals preparing for, or trying to maintain, employment. Working Well can stand alone or serve as an advanced topics class for Living Well with a Disability program graduates whose goal is employment. It is most often delivered in Centers for Independent Living in partnership with VR offices.

The curriculum of Working Well is geared toward developing healthy lifestyle habits and maintaining life balance as participants work toward employment goals. Topics include information and strategies for adopting stress management, nutrition, and physical activity practices, and lifestyle maintenance.  During the workshop, participants discuss how their personal life values fit with employment. They reflect on the things that are important to them and how to balance those things with work.

Participants in the Working Well workshops report improved health and capacity to work, enhanced peer support and less isolation, appreciation for the supportive peer community developed during the workshop, and lasting friendships. (http://livingandworkingwell.ruralinstitute.umt.edu

Loneliness and Its Relation to Health in People with Spinal Cord Injury

Rosemary Hughes

The Loneliness and Its Relation to Health in People with Spinal Cord Injury (SCI) project explores how loneliness interacts with other factors to impact the mental and physical health of people with SCI.

The project is a three-year, national study funded by the Department of Defense.

"This study represents the most comprehensive investigation of the impact of loneliness on the health of people with spinal cord injury conducted to date," says Dr. Rosemary Hughes, Senior Research Scientist at the Rural Institute. Hughes is partnering with Baylor College of Medicine, TIRR Memorial Hermann, and a Community Advisory Board of veterans and other adults with SCI in this research project. The team hopes to involve more than 350 research volunteers with SCI to contribute to the success of the study.

"Our findings will have the potential to improve the understanding of factors associated with loneliness, support health care providers in better identifying those at greatest risk of loneliness, inform the development of interventions to reduce loneliness, improve the quality of life of people with SCI, and influence change in policy and practice," says Hughes.

Montana Assistive Technology Program

Marty Blair

The Montana Assistive Technology Program (MATP) is the Statewide AT Program funded under the Assistive Technology Act of 1998, as amended. MATP’s lead agency is Montana DPHHS: Disability Services Division, Vocational Rehabilitation Services. MATP is located within the University of Montana Rural Institute on Disabilities, Missoula and serves all Montanans with disabilities and their supports.

MATP provides AT information and services in the areas of education, employment, community living, and telecommunications. MATP’s services are consistent with the Rural Institute’s mission of enhancing the independence, productivity, integration, and inclusion of individuals with disabilities through consumer responsiveness as defined in the AT act.
In achieving these goals, MATP provides the following free of charge:

  • A short-term AT Equipment Loan Program for individuals to borrow and try AT devices for evaluation purposes before purchasing (available online)
  • An AT Demonstration Center for individuals and/or groups to explore, see, and try various AT devices
  • An online Equipment Exchange forum for the reutilization of AT devices through giveaways, exchanges, and sales
  • A low-interest Financial Loan program to allow individuals to purchase AT devices when other funding is unavailable

(http://montech.ruralinstitute.umt.edu/)

Montana Autism: Next Steps

Marty Blair
 
The "Montana Autism: Next Steps" project is designed to improve outcomes for young children in Montana who may be at risk for ASD/DD by improving early identification and early intervention efforts in underserved areas of the state. Rural Institute staff works closely with the the "Montana Learn the Signs: Act Early (LTSAE) Ambassador" and other autism and early intervention/ early childhood experts in Montana to accomplish the following four goals: I. Develop and implement a statewide ASD/DD plan with input from partners with a wide variety of stakeholder perspectives; II. Improve the capacity of local providers to deliver universal screening at 18 and 24 months; III. Focus information dissemination efforts on hard-to-reach groups, e.g., American Indian populations and extreme rural and frontier communities; and, IV. Establish the framework for a Montana Autism Toolkit and Roadmap for parents, childcare providers, educators, early intervention providers, and health practitioners. (http://autism.ruralinstitute.umt.edu)

Montana Deaf-Blind Project

Ellen Condon

Individuals from birth through age 21 who are impacted by both vision and hearing loss are eligible for project services. Staff of the Montana Deaf-Blind Project partner with Outreach Consultants from the Montana School for the Deaf and Blind to provide information, technical assistance, and professional development to families and professionals who provide services to individuals who are deaf-blind. (http://mtdeafblind.ruralinstitute.umt.edu/)

Montana Disability and Health Program

Meg Traci

The Montana Department of Public Health and Human Services established the Montana Disability and Health Program (MTDH) in 2002. The Department charged MTDH to serve as a focal point for disability programs, services, and activities related to health in the State. The Chief of the Bureau of Chronic Disease Prevention and Health Promotion serves as the Principal Investigator of the program. In addition, the Department has designated the University of Montanan’s Rural Institute on Inclusive Communities as its agent to provide program supports. A faculty member of the Institute serves as Project Director under contract to the Department.

MTDH’s mission is to eliminate health disparities experienced by Montanan’s with disabilities. Specific goals of this program include:

  • Enhance program infrastructure and capacity
  • Improve state level surveillance and monitoring activities
  • Increase awareness of health-related disability policy initiatives
  • Increase health promotion opportunities for people with disabilities to maximize health
  • Improve access to health care for people with disabilities
  • Improve emergency preparedness among people with disabilities
  • Effectively monitor and evaluate program activities

MTDH executes this mission (1) by monitoring the health status of Montanans with disabilities, (2) by facilitating the involvement of people with disabilities and their representatives in policy and planning processes of the state, (3) by integrating health issues into the activities of state disability services programs, (4) by integrating disability issues into broader programs and services of the state, (5) by providing training and technical assistance on delivering health promotion services to populations of persons with disabilities, (6) by improving access to health screenings and health care, (7) by promoting improvements in accessibility of community environments to local agencies and organizations providing health and disability program, and (8) by demonstrating new, evidence based approaches to health promotion for people with disabilities.

Organizationally, a CORE Management Team (CMT) provides oversight and direction. The CMT is composed of the directors of the four DPHHS divisions most directly involved in health and disability (Public Health and Safety, Developmental Services, Disability Transition Services, and Senior and Long Term Care). Finally, two faculty members of the University of Montana’s Rural Institute (Project Director and Senior Scientist) staff the program and participate as members of the CMT.

Additionally, a CMDH provides advice to the CMT and conducts programmatic initiatives of its own. The CMDH is composed of individuals with disabilities from State designated geographic regions, various disability service providers, and key State agency personnel. Programmatically, staff of the Rural Institute organizes data about issues of disability and health to present to the CMT. The CMT assesses the data, seeks advice from the CMDH and sets priorities for policy and program implementation. Depending on the area, the CMT may set program goals and procedures for their own divisions, collaborate with each other to achieve a goal, identify other agencies of State government that should integrate disability and health priorities and practices into their programs, or direct the bona fide agents to conduct specific program activities. Finally, the CMT monitors and assess program performance.

 (http://mtdh.ruralinstitute.umt.edu/)

Montana Family to Family Health Information Center (F2F- HIC)

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The Montana F2F-HIC will support families by providing access to Montana-relevant, evidence-based resources and creating connections to peer-support resources.

"Montana families of children and youth with special health care needs have unique challenges accessing health care. Montana’s Family to Family Health Information Center will be staffed by Montana parents who have experiences with these challenges, making the center positioned to assist families", said Jenn Banna, Project Coordinator.

The Family to Family Center will be directed by a statewide advisory board made up of mostly parents. The Center will:

  • Develop materials, webinars and a social media resources
  • Provide one-on-one, family-to-family, and peer-to-peer support
  • Offer parent and family advocacy training
  • Train health care professionals

"Montana is fortunate to have excellent family advocates,” said Marty Blair, Executive Director of the Rural Institute. “We look forward to helping connect these advocate-partners to improve health-related outcomes for Montana’s children and youth with complex health needs. The Rural Institute will provide the framework and support; the families will lead the project."

Montana Family Home Visiting Program Needs Assessment

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The Rural Institute was awarded a one-year state contract to assess the Montana Healthy Families (MHF) Home Visiting Program which supports voluntary home visiting services for at-risk pregnant women and parents with young children.

The MHF Home Visiting Program builds on decades of research showing that home visits by a nurse, social worker, early childhood educator, or other trained professional during pregnancy and in the first years of a child's life improve the lives of children and families by:

  • helping to prevent child abuse and neglect
  • supporting positive parenting
  • improving maternal and child health
  • promoting child development and school readiness

The Rural Institute is working with Montana's Department of Health and Human Services to conduct a mandated needs assessment for the MHF Home Visiting Program.  The needs assessment will work to identify Montana communities that could benefit the most from Home Visiting programs. Further, it will assess the capacity of the Home Visiting workforce, evaluate the state's capacity to provide substance abuse treatment and mental health services to individuals and families who need them, and identify opportunities to strengthen and expand services for at-risk families.

Motivation for Self-Management

Craig Ravesloot

The overall goal of this development project is to improve the health of people with disabilities living independently in the community by increasing accessibility to evidence-based health promotion curricula that has been shown to be cost-effective for reducing limitation due to secondary conditions. To achieve this goal, we will develop two online multimedia curricula for use by community-based service agencies that better match the reported needs and preferences of intended consumers. The first product, Multimedia Living Well with a Disability (MMLWD) is an adaptation of our Living Well with a Disability 4th Edition workbook to a multimedia format. The second product, Motivating Self-Management (MSM), is a melding of our Peer Support Training program and Independent Living (IL) skills training conducted by centers for independent living (e.g., time management, budgeting) and informed by Self-Determination Theory. This curriculum is a module for people with little experience in self-management to increase autonomy, confidence and relatedness, the basic human needs of Self-Determination Theory. When complete the Motivation for Self-Management curriculum will prepare people with low self-management skills and self-determination to complete the MMLWD program or any other self-management program. For both products, we will use the multimedia format to form a multiplex community that incorporates both online social media and offline face-to-face learning components (Sunderland, Beekhuyzen, Kendall, & Wolski, 2013). This approach to content management and delivery preserves vital components of face-to-face learning (e.g., peer support) while incorporating modern social media tools that improve the interest and engagement of learners. We will use WordPress, a commonly available platform for content management and delivery to develop both MMLWD and MSM curricula. Our training procedures will instruct facilitators on methods for integrating didactic media with exercises and discussion. This approach will lead to products that improve availability, consumer engagement, fidelity and cost-effectiveness of the curricula and hold promise for commercialization and upscaling. We will develop these multimedia curricula and prepare them for upscaling by accomplishing five objectives:

  1. Partner with the Association of Programs for Rural Independent Living (APRIL) to establish and maintain a network of eight Centers for Independent Living (CILs) to engage in an iterative development process.
  2. Work with APRIL and the CIL network to establish the procedures of an Iterative Participatory Curriculum Development (IPCD) process that integrates data collection with repeated testing and consumer input to assure quality and usefulness of the end products (Taylor, 2003).
  3. Use the IPCD process to develop the Multimedia Living Well with a Disability program and the new Motivation for Self-Management module by exploring multimedia content and the application of social media (e.g., Pinterest.com).
  4. Evaluate new curricula as they are implemented by staff within CILs to examine effectiveness of each under “real world” conditions. 5. Scale up the Living Well with a Disability (LWD) program through effective dissemination, technical assistance and training activities that report on process and outcome evaluation and prepare facilitators to use each product.

Movin’ On in Montana

Marty Blair

Movin’ On is a 4-day, 3-night campus experience that provides students who are within 20 months of school completion an opportunity to learn about college life.

Students attend a 4-day seminar, spending 3 nights in a university dorm.  Parents attend the introduction luncheon with a question and answer session following check-in.  The parent/family seminar covers rights and responsibilities of students under the ADA and Section 504, and the differences between high school and higher education policies and practices.  Students learn how to request reasonable accommodations/ modifications and how to effectively communicate with instructors.  Other topics covered during the four days include assistive technology, vocational rehabilitation (VR) services, general academic support resources, attending a university lecture and class (tailored to the participants), financial literacy for students, university housing and a panel presentation by current UM students.  Social skills and recreation are part of the well-rounded curriculum in order to give students a realistic campus experience.  Students prepare a reflection project to present to the group on the final day. 

Movin’ On is a collaborative effort between the Rural Institute for Inclusive Communities and the UM Disability Services for Students Office. Program staff includes faculty, students and staff from the sponsoring Montana University System (MUS) institution. The program is designed to be adopted at other MUS campuses.

Out and About

Lillie Greiman
 
The Out and About intervention will be a blended adaptation of two interventions, one a long-established evidence-based intervention to promote wellness for people with physical disabilities called Living Well with a Disability and the other a health promotion intervention currently under development focused exclusively on setting goals related to health and self-advocacy skills. This research project is part of a larger Research and Training Center (Promoting Interventions for Community Living - PICL) out of the University of Kansas. The Home Base project is the other intervention within this center. The two projects will eventually be merged and tested together.

Partnering with Women with Disabilities to Develop a Health Information Website

Rosemary Hughes

Women with disabilities are living longer with better quality of life as a result of advances in medical science, pharmacology, and technology. For those with access to those resources, the risks of morbidity and mortality from disabling conditions combined with common diseases and injuries have been significantly reduced. The problem society faces, however, is bringing this life-saving knowledge, particularly in the area of women’s health, beyond the walls of academic medical centers to the community clinics and homes of the women and their families. Applying principles of community based participatory research and a rigorous scientific approach, this project will partner closely with consumers, clinicians, researchers, and librarians in every phase of the development of an easily accessible, understandable, and usable online information resource on women's health in the context of disability, test its usability in an iterative process, and produce a user training program. The project constitutes a coherent, sustained approach to improving the health of women with disabilities.
 
The goal of this project is to improve the reproductive and pelvic health of women with disabilities. In partnership with the Texas Medical Center Library and a Community Advisory Board, with review by clinicians and researchers, this project will create a health information website that is fully interactive and searchable by women with disabilities. The purpose of this website is to employ commonly used information technology to empower women with disabilities to become self-informed about decisions related to improving their health. Focus groups and a national survey of 500 women with physical disabilities will identify their information needs and access to digital technologies. Comprehensive literature reviews of reproductive health, pelvic health, sexuality, and access to health care for women with disabilities will provide information to populate the website and produce downloadable topical summaries with links to other information resources. Second will be the development of a tailored training program for women with physical disabilities on how to use this website, with feasibility testing using face-to-face and online formats with 30 local women. This health information website and accompanying training program will be designed to promote health literacy, improve reproductive and pelvic health outcomes of women with disabilities, and reduce health disparities.

Rocky Mountain ADA Technical Assistance Partnership

Marty Blair

The Rural Institute partners with the Rocky Mountain ADA Technical Assistance Center (http://www.rockymountainada.org/) and law students from the University of Montana Blewett School of Law to develop quasi-legal responses to ADA-related policy and legal questions. The responses are used by Center staff and consultants to address pressing or emerging ADA-related issues in the Rocky Mountain region (Colorado, Montana, North Dakota, South Dakota, Utah, & Wyoming). The RM ADA TA Center is part of a national network of federally-funded Centers designed to provide information, guidance and training on how to implement the Americans with Disabilities Act (ADA) in order to support the mission of the ADA to “assure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”

RTC on Disability on Community Living /Research and Training Center on Community Living Sub-award

Craig Ravesloot

The study uses a survey to construct a measure of CIL services and how they are delivered (process dimensions). We are interested in how CIL staff members and board members view the services offered by their organization and their ability to help consumers more fully participate in the community. They rank the importance of the services and their satisfaction with them. The next phase of the project will survey consumers for their perspectives to refine the measurement tool. This project develops and tests a measurement tool for community participation. This tool will provide centers for independent living (CILs), which serve people with disabilities, with a scientific method for measuring the effectiveness of their services. With the information provided by this new tool, CILs may enhance their services, modify staff training, and tailor programs to help their consumers participate more fully in the community.

http://rtc.ruralinstitute.umt.edu/

RTC 7 Projects: Place-based Solutions for Rural Community Participation

RTC:Rural research addresses barriers identified by rural people with disabilities in the areas of health, community living, and employment. These barriers are often related to the limited resources available in rural environments. The following RTC7 projects are funded through 2022.

R1: Expanding the Availability and Quality of Rural Data

Catherine Ipsen, Bryce Ward

Community Participation & Independent Living
In order to create policies and programs that serve the needs of people with disabilities in rural communities, it is important to know things about them, such as demographic information and location. The federal government maintains several large data sets that collect this information. These include the American Community Survey, the Current Population Survey, the Behavioral Risk Factor Surveillance System, and the Survey on Health Reform and Disability. However, it can be difficult to access rural disability data from these data sets (see Data Limitations in the American Community Survey: The Impact on Rural Disability Research).

To address these issues, RTC:Rural is partnering with the Disability Statistics and Demographics Rehabilitation and Research Training Center (StatsRRTC) to conduct rural analyses of existing large data sets. These rural analyses will help describe the experiences of rural people with disabilities, and can be used to inform advocates, service providers, researchers and policymakers about emerging trends, hypotheses and policy impacts.

R2: Exploring Rural Disability Onset

Bryce Ward, Craig Ravesloot

RTC:Rural’s previous research has found that people who live in rural areas begin to experience disability from mobility, cognitive and sensory impairment as much as 10 years before people in urban areas. There are also higher rates of disability in rural areas across all age groups. We have also found that racial and ethnic minorities experience the highest disability rates as well as the greatest urban/rural differences.

In order to understand urban/rural differences, we need to understand how disability evolves in rural and urban areas, and what influences disability severity outcomes. If disability evolves differently, these differences may provide insight into the nature and context of rural disability and may help inform interventions. This study will also examine migration, and how moving from an urban to rural area (or vice versa) can affect the disability experience.

This study will use data from the National Longitudinal of Adolescent to Adult Health Study (Add Health), the National Longitudinal Survey of Youth 1979 (NLSY79), and the Health and Retirement Study (HRS) to explore the following questions:

  • How does disability severity evolve over the life course and how does the evolution of disability vary between urban and rural areas?
  • What are the common precursors of disability and how do these vary between urban and rural areas?
  • How does migration from an urban area to a rural one (or vice versa) affect disability severity?

R3: Rural Access to Health Insurance and Health Care

Catherine Ipsen, Bryce Ward

Rural Americans have less access to quality health care and lower rates of health insurance coverage than those who live in urban areas. Legislative changes at both the federal and state levels will likely increase these disparities.

The Collaborative on Health Reform and Independent Living (CHRIL) is conducting the nation-wide Health Reform and Disability Survey to understand how changes in health care reimbursement strategies affects working-age people with disabilities in terms of access to health insurance, and associated health care and quality of life outcomes. RTC:Rural is partnering with CHRIL to increase the rural representation in the survey.

RTC:Rural will use the gathered data to answer the following rural-specific questions:

  • How do changes in health care reimbursement strategies change the composition of insurance coverage for rural people?
  • How do changes in health care reimbursement strategies impact the availability of health care for rural people?
  • How do changes in health insurance coverage impact the health and quality of life of rural people?

R4: Rural Resource Analysis

Lillie Greiman, Bryce Ward

The availability of community resources, as well as access to those resources, has a large impact on the experience of disability (Greiman & Ravesloot 2016; Myers & Ravesloot 2016). The Rural Resource Analysis project aims to understand how rural people with disabilities access needed resources, such as Centers for Independent Living, Area Agencies on Aging, housing, education, transportation, Personal Assistance Services, cultural events, hospitals, and businesses.

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. There are many factors that influence resource access, including language, digital inequality, social and cultural networks, age, socioeconomic status, and personal value systems. 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.

Together, these analyses will help determine the different ways in which people with disabilities access resources to engage in their communities.

This project will provide a backdrop for the contextual understanding of research outcomes from our other research projects, including: Building Networks to Expand Living Well Delivery, Personal Assistance Services in Rural America, Rural Transportation Options, and Rural Self-Employment.

R5: Building Networks to Expand Living Well Delivery

Tannis Hargrove, Craig Ravesloot, Tracy Boehm, Justice Ender

Living Well with a Disability is an evidence-based, peer-led self-management program that helps participants to set and reach quality-of-life goals by developing a healthy lifestyle. RTC:Rural provides training and certification for Centers for Independent Living (CILs) to conduct the workshops, and we have trained over 1,000 facilitators in 47 states. We estimate that these efforts have improved the health of nearly 10,000 people with disabilities.

For more information about the history of the Living Well with a Disability program, you can find links to publications, scholarly articles, and abstracts on the Living Well with a Disability project page.

In 2016, we received NIDILRR funding to adapt the Living Well with a Disability hard-copy workbook to an online course as part of the Healthy Community Living project. This adaptation is called Living Well in the Community (LWC), and will be used in the Building Networks to Expand Living Well Delivery project.

However, not all people with disabilities who may benefit from Living Well are connected to their local CILs. By partnering with rural community hospitals and CILs, the Building Networks to Expand Living Well Delivery project will expand the reach of Living Well. This project will implement and evaluate the effectiveness of the Living Well program in 15 diverse rural counties across the US that have a rural hospital located in a CIL service area. Scaling up Living Well to rural hospitals will extend the reach of the program and improve the capacity of rural hospitals to support rural independent community living.

R6: Personal Assistant Services (PAS) in Rural America

Rayna Sage

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.

Centers for Medicare and Medicaid Services have asked states to rebalance their Long-Term Supports and Services Medicaid dollars by shifting away from institutional services, like nursing homes, towards home- and community-based services (HCBS). Growing investment and interest in HCBS, like PAS, needs to be matched with critical research and related training that will ensure these services are meeting the unique needs of people with disabilities in rural places. Currently, fewer HCBS are used in rural than urban areas, and more is spent on institutional costs in rural areas. As well, current HCBS in rural areas are insufficient to replace services previously provided by long-term care facilities, and there are lower ratios of PAS workers to people with disabilities.

This project is both an exploratory and intervention development project designed to address rural PAS outcomes for alternative models of service delivery. It is comprised of two studies:

Study 1: Models of Care and Community Participation in Urban and Rural Places

Study 1 will use a Rural PAS Advisory Board to develop and implement data collection and analysis to determine how rural people with disabilities use alternative models of PAS service delivery. These results will help understand how rural contexts affect the uptake of each PAS service model, which could help improve efficiency and effectiveness of service delivery as well as increase availability of PAS services for rural people with disabilities.

Study 2: Adapting PAS Training for Rural Contexts

Study 2 will modify existing PAS training curriculum using Iterative Participatory Curriculum Development, an approach to forming a working relationship between researchers and decision-makers to collaboratively create a product. Development procedures and pilot test rural PAS training content to improve the community participation of consumers.

R7: Rural Transportation Options

Andrew Myers

Nearly 30 years after the passage of the Americans with Disabilities Act, 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. Transportation is critical to maintaining employment and social connections in rural areas. Isolation, which can result from a lack of transportation, contributes to poor physical and mental health.

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.

The Rural Transportation Options project will begin to compile this knowledge through two different surveys. The first, Exploring Transportation Models and Use, asks the following questions:

  • How many rural public transportation users have a disability?
  • How is transportation related to an individual’s health and how do they participate in their community?
  • Is access to community resources (such as Centers for Independent Living) related to transportation access?

The second survey, Transportation and Community Participation, asks the following questions:

  • How does transportation use influence decisions about community participation for people with disabilities living in rural areas?
  • What is the relationship between transportation and social capital?

The information gathered from these surveys will begin to develop an evidence-base and policy recommendations to promote transportation development for rural people with disabilities. These results can be used to advocate for improve transportation services and to develop effective policies to increase the availability of accessible transportation services.

R8: Rural Self-Employment

Catherine Ipsen

Self-employment is an important alternative to traditional paid employment for people with disabilities, especially in rural areas where job opportunities are limited. Data from the 2016 American Community Survey showed that there are higher rates of self-employment among people with disabilities than without, and higher rates of self-employment in non-metro (rural) than metro (urban) counties. Self-employment can be a good option for people with diverse disabilities, and is an important option on American Indian reservations.

However, VR closures to self-employment have been low, due to counselor attitudes, limited training in business-start up activities, and concerns about cost. To address these concerns, we developed the Vocational Rehabilitation (VR) Self-Employment Guide. The Guide was created to help people with disabilities and VR counselors understand the self-employment process. It provides a way for consumers and counselors to work from the same material while assessing self-employment readiness and developing a business plan. The VR Self-Employment Guide is a self-directed, multi-media website designed to be used by individuals with or without the guidance of a VR counselor or business development mentor.

School Climate Transformation: MBI in High Need Areas

Marty Blair

The Rural Institute serves as the Project Evaluator for the Montana Office of Public Instruction (OPI)  Montana Behavioral Initiative (MBI) implementation in targeted, high need schools. We provide process and outcome evaluation, and assist with general program evaluation activities. The primary evaluation activity is to describe and summarize implementation efforts so that effective and efficient MBI replication may be accomplished. We also assist OPI in helping local education agencies (LEA)  improve the quality, accessibility, and usefulness of LEA data collection and data-based decision making. We coordinate our evaluation activities with the NITT-Project AWARE-SEA. The evaluation plan measures the following outcomes: (a) an increase in the number of MBI schools and LEAs, particularly high-need and Indian Country schools; (b) a more strategically located cadre of statewide MBI coaches who can devote more time to helping LEAs implement MBI; (c) a full-time MBI Director; (d) an increase in the number of schools using Quaglia Student Voice; (e) more effective coordination of resources; (f) improvement in school climate in MBI schools; (g) an increase in school safety--a decrease in bullying and reduction in discipline referrals, suspensions, and expulsions; (h) increased instructional time; and, (i) improved overall academic achievement. Over the five years of the grant, we expect to serve the following Montana LEAs: Ashland, Brockton, Browning, Butte, Frazer, Hayes/Lodgepole, Heart Butte, Kalispell, Lodge Grass, Miles City, Pine Hills/Riverside, Poplar, Pryor, Wolf Point, and Wyola.

Texas Model Spinal Cord Injury System

Rosemary Hughes

The purpose of this spinal cord model systems project is to address and work toward improving the health and well-being of people with spinal cord injury (SCI). The University of Montana, under the supervision of Dr. Rosemary Hughes, contracts with the Texas Model Spinal Cord Injury System (TMSCIS) project at TIRR-Memorial Hermann (TIRR) to support its high level of contributions to the National SCI Database and Registry and assist with the dissemination of information based on the analyses of those data. Additionally, we will partner closely to conduct a clinical trial of a psychological health promotion intervention for women with SCI delivered in the online virtual world of Second Life and co-facilitated by subcontract PI Hughes. Our innovative online approach will reduce environmental and other barriers to participation, representing the first group intervention designed to respond to the unique psychological needs of women with SCI. The intervention will be tested with a national sample of 192 community-living women with SCI who will be randomly assigned to either a group that will participate in the 10-session intervention, or to a control group that will receive intervention materials at the end of the intervention trial. Using a within- and between-groups pre/post-test design with three- and six-month follow-up assessments at three time points (pre-intervention, post-intervention, and 6-month follow-up), the team will have the capacity to examine the immediate and longer-term efficacy of the intervention and the mechanisms through which the intervention influences psychological health outcomes. The TMSCIS will also collaborate with four other Model Systems program on collaborative module projects.

Title V Maternal and Child Health Services Block Grant Program Assessment

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The Rural Institute was awarded a one-year state contract to assess the Title V Maternal and Child Health (MCH) Services Block Grant Program. Title V MCH Block Grant is a federal program that provides support for promoting and improving the health and well-being of mothers, children (including children with special health care needs), and their families. 

In Montana, Title V Maternal and Child Health programs are managed by the state’s Department of Public Health and Human Services.  Dr. Kaitlin Fertaly is working with Montana’s public health department to conduct the 2020needs assessment.  The need assessment will review the health needs of Montana’s mothers, children, and families.  It will examine statewide capacity to fully address these needs, identify and select priorities for the coming 5 years, and allocate available resources.  The needs assessment findings also provide a benchmark for states to assess their progress during the previous 5 years.  

To complete the needs assessment, Dr. Fertaly of the Rural Institute will collect data on key health outcomes of the MCH population, engage stakeholders across the state to help identify the most important needs in their local communities, and identify evidence-based strategies to address those priority needs.

Transition and Employment Projects

Ellen Condon

The University of Montana Rural Institute has been a leader in the area of transition planning for youth with disabilities since 1995. Activities have included:

  • Provision of education and training to schools, families, students and agencies
  • Development of innovative strategies and transition models;
  • Demonstration, outreach and technical assistance, both on-site and long distance;
  • Promotion of systems changes to support effective transition for youth from school to adult life; and
  • Information dissemination.

Since 2000, we’ve focused several of our projects on customized community employment for youth with significant disabilities. We have developed and implemented unique models of transition planning that continue to evolve as we learn more from the youth and families with whom we work.

Our transition activities are unique in that they promote:

Customized Employment strategies for youth with disabilities;

  • The use of Social Security work incentives for students;
  • Transition planning for middle school students;
  • Collaborative funding across agencies to create individually-driven employment supports;
  • Self-employment as vocational experience or as a post-school outcome; and
  • Self-determination for youth as we empower them to identify strengths, skills, and needs for transition planning.

(http://ruralinstitute.umt.edu/transition/default.asp)

Transition Outcomes for Youth with Deaf-Blindness

Ellen Condon

The National Center on Deaf-Blindness (NCDB) contracts with the Rural Institute to provide support and technical assistance with the center's outreach to state deaf-blind projects around transition for students with deaf-blindness and additional disabilities.

URLEND

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The Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) is a regional program that supports Montana trainees through the Rural Institute. The Maternal Child Health Bureau renewed the URLEND grant this year, extending funding for the program for an additional five years. The URLEND program, a joint effort of the University of Utah School of Medicine-Department of Pediatrics, Utah State University-Center for Persons with Disabilities (a University Center for Excellence in Developmental Disabilities Education, Research, and Service), and the Utah Department of Health's Bureau for Children with Special Health Care Needs was first funded in 2001 and ran successfully for 5 years before being refunded in 2006 for an additional 5 years. The URLEND Program's Goals include: 1) Strengthen and further expand the functional, programmatic, and evaluative infrastructure of URLEND in partnership with ID, MT, ND, and WY to prepare exemplary leaders in the health care system; 2) Provide interdisciplinary leadership experiences to URLEND trainees within the context of integrated didactic, clinical, and leadership/research activities; and 3) Provide evidenced-based CE/training, consultation, and technical assistance opportunities to health care professionals in UT, ID, MT, ND, and WY that address current and emerging priorities and concerns in the provision of family-centered, culturally competent, community-based integrated systems of care.

URLEND Leadership trainees gain knowledge to enhance and integrate their clinical, research, and leadership skills to become exemplary leaders in their fields. Leadership trainees must complete at least 300 clock hours (over 2 semesters) to receive a stipend and participate as long-term leadership trainees. Given the expectations of the URLEND program with its focus on leadership skills, trainees participating at a less intensive level of a time commitment would not be able to complete the didactic, clinical, research and evaluation, and leadership requirements.

UM OUTREACH

Julie Wolter

The University of Montana’s Department of Communicative Sciences and Disorders, in partnership with the Rural Institute for Inclusive Communities, was awarded a $1.2 million grant to provide training to professionals seeking to become competent, certified speech-language pathologists and contribute to the speech, language and literacy needs in their respective rural communities. The grant is funded by the U.S. Department of Education’s Office of Special Education and Rehabilitative Services.

The UM-OUTREACH grant expands graduate programming to include an emphasis on specific knowledge and skills important for successful clinical intervention in rural areas. Training includes sensitivity to cultural and linguistic diversity, as well as tele-health intervention and implementation.