RehabWire - Volume 11, Number 6, June 2009.

The Research and Training Centers in Participation and Community Living.

In FY 2008 NIDRR funded more than $8.8 million in Participation and Community Living research.

NIDRR Grantees on the Cutting Edge.

Rehabilitation Research and Training Center for Children’s Mental Health University of South Florida (H133B040024) led by Robert Friedman, PhD. Bonnie Gracer, Project Officer.
Abstract: This project conducts an integrated set of research projects designed, in the short run, to enhance knowledge about effective implementation of systems of care, and, in the long run, to make it possible for children with serious emotional disturbances to live, learn, work, and thrive in their own communities. The Center has developed a theory of factors that contribute to effective implementation; within that theory is a strong emphasis on the importance of understanding from a systemic perspective the interrelationship between the different factors, and their relationship to the community culture and context in which a service delivery system exists.
Find out more at: rtckids.fmhi.usf.edu

Rehabilitation Research and Training Center for Recovery and Recovery Oriented Psychiatric Rehabilitation for Persons with Long-Term Mental Illness Boston University (H133B040026) led by Marianne Farkas, ScD & E. Sally Rogers, ScD. Bonnie Gracer, Project Officer.
Abstract: This project focuses on the concepts and dimensions of recovery and the various factors that inhibit and facilitate recovery from long-term mental illness by a comprehensive and meritorious set of research projects and training, technical assistance, and dissemination activities. The RTC’s programs are organized into the following three programmatic areas of investigation and development: concepts and dimensions of recovery, factors enhancing recovery, and factors inhibiting recovery.
Find out more at: www.bu.edu/cpr/research/ongoing/rtc2009/index.html

"For the promise of full participation and community living to become a reality, people with disabilities need safe and affordable housing; access to transportation; access to the political process; and access to the services, programs, and activities offered to all members of the community at public and private facilities." NIDRR’s Long Range Plan 2005-2009

Rehabilitation Research and Training Center for Community Integration for Individuals with Disabilities, Strengthening Family and Youth Participation in Child and Adolescent Mental Health Services Portland State University (H133B040038) led by Barbara Friesen, PhD. Bonnie Gracer, Project Officer.
Abstract: This project conducts research, training, and technical assistance activities to study and promote effective, community-based, culturally competent, family-centered, individualized, and strength-based services for children and youth with emotional or behavioral disorders and their families. Projects include: (1) Community Integration (CI) of Transition-Age Youth; (2) Transition to Independence: Outcomes of School-Based Support for Youth with Mental Health and Developmental Disabilities; (3) Achieve My Plan (AMP); (4) Work-Life Integration for adult caregivers; (5) Transforming Transitions to Kindergarten; and (6) Practice-Based Evidence: Building Effectiveness from the Ground Up, in partnership with a Native American youth organization and the National Indian Child Welfare Association.
Find out more at: www.rtc.pdx.edu

Opening Doors for Children with Disabilities and Special Health Care Needs Children’s Hospital (H133B060012) led by Judith S. Palfrey, MD. Bonnie Gracer, Project Officer.
Abstract: This project focuses on children with disabilities who have special health care needs (CYDS) and tests the effectiveness of two intensive interventions, integrated transition planning and community participation in recreation and fitness, and demonstrates the viability of a screening tool to promote access to services and supports for traditionally underserved communities. Research activities include two intervention projects that use randomized controlled designs to improve the educational and recreational activities of CYDS and a demonstration project to improve the early identification of CYDS from traditionally underserved communities.
Find out more at: www.openingdoorsforyouth.org

Rehabilitation Research and Training Center on Measurement and Interdependence in Community Living (RRTC/MICL) The University of Kansas (H133B060018) led by Glen W. White, PhD. David W. Keer, Project Officer.
Abstract: The goal of this project is to increase the independence and participation of people with disabilities in their communities through the development and implementation of scientifically sound, theoretically driven, and evidence-based interventions. Two research projects, one on community participation and a second on economic utility, involve development of theory-driven measurement tools. An assessment project uses secondary analysis to develop and implement a model for assessing the economic utility and health-related outcomes of participants enrolled in Home and Community-Based Service waivers. A second assessment project evaluates the effects of different independent living advocacy-service models to determine the comparative effectiveness of different models in increasing community participation. An intervention project examines the effectiveness of personal assistance services and enhanced training to increase consumer participation in the community. The second intervention project examines the effects of a consumer-led grassroots approach in identifying and removing barriers to increase community participation.
Find out more at: www.rtcil.org/micl

Personal Assistance Services (PAS) in the 21st Century University of California, San Francisco (H133B080002) led by Charlene Harrington, PhD, RN; H. Stephen Kaye, PhD; Mitch LaPlante, PhD; & Robert Newcomer, PhD. David W. Keer, Project Officer.
Abstract: This project: (1) analyzes trends in the met and unmet needs for PAS in the United States, and the changing demographics of the PAS population, and makes national and state projects of need; (2) investigates the relationship between need and economic status for working age and older groups; (3) tracks and analyzes trends in PAS participants, services, and expenditures and federal and state Olmstead-related initiatives to expand PAS; (4) identifies state PAS policies and barriers to meeting the need for PAS; and (5) analyzes state PAS intervention strategies and factors which impact the success of expanding PAS services.
Find out more at: www.pascenter.org

Rehabilitation Research and Training Center for Community Living and Employment for Individuals with Intellectual and Developmental Disabilities University of Minnesota (H133B080005) led by Charlie Lakin, PhD. Dawn Carlson, PhD, MPH, Project Officer.
Abstract: This project conducts intervention and outcome research to generate and share knowledge about community living, employment, and self-determination. This project studies intervention programs in self-determination, relationship building, employment, and direct support professional training, and the first US and largest ever trial of the active support model of organizational and staff support of persons with I/DD. Additionally, this study identifies and evaluates existing instrumentation in community living outcome studies.
Find out more at: rtc.umn.edu

Rehabilitation Research and Training Center for Health and Function Across the Lifespan of Individuals with Intellectual and Developmental Disabilities University of Illinois at Chicago (H133B080009) led by Tamar Heller, PhD. Dawn Carlson, PhD, MPH, Project Officer.
Abstract: This project provides a beneficial impact on the health and function of adults with intellectual and developmental disabilities (I/DD) and their families over their lifespan through a coordinated set of research, training, technical assistance, and dissemination activities. Projects relating to the promotion of health and function include: (1) examination of risk factors and age-related changes in health status for adults with varying neuro-developmental conditions; (2) cohort study of health behaviors on health and function, and interventions to improve balance and prevent falls for people with I/DD; and (3) innovative approaches to community-based health promotion for people with I/DD.
Find out more at: www.rrtcadd.org

Rehabilitation Research and Training Center on Participation and Community Living of Individuals with Psychiatric Disabilities University of Pennsylvania (H133B080029) led by Mark Salzer, PhD. Bonnie Gracer, Project Officer.
Abstract: The research of this center focuses on two core areas: (1) Enhancing the capacity of individuals and systems to maximize participation and community living through the advancement of theory, measures, methods, and intervention knowledge, with a focus on Centers for Independent Living, specific and broad participation domains, and efforts to address disparities in understudied areas; and (2) increased incorporation of mental health research findings into practice and policy through systematic reviews, partnering with multiple stakeholders to advance the use of knowledge, and providing training, dissemination, and technical assistance to change behaviors and practices of key stakeholders.
Find out more at: www.upennrrtc.org

Please note: These abstracts have been modified. Full, unedited abstracts, as well as any available REHABDATA citations, are available at naric.com.

Logo for the National Council on Independent Living

The National Council for Independent Living (NCIL) was founded in 1982 and represents organizations and individuals concerned with participation and community living, including independent living centers, statewide independent living councils, individuals with disabilities, service providers, and other organizations. NCIL works on a variety of legislative, health care, and social justice issues in the disability community. Read more about NCIL’s history, mission, and vision at www.ncil.org/about.html

Current Literature: Selections from REHABDATA

Heller, T. (2008) Report of the state of the science in aging with developmental disabilities: Charting lifespan trajectories and supportive environments for healthy community living symposium. Disability and Health Journal, 1(3), 127-130. NARIC Accession Number: J55005. Project Number: H133B031134.
Abstract: Article is an introduction to the findings of the 2007 ‘‘State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living’’ symposium. The purpose of this symposium was to identify a research agenda to improve the health, psychosocial well-being, and community participation of adults with intellectual and developmental disabilities (IDD) over their life course. Recommendations offer a research agenda that would provide information on the life span trajectory for individuals with IDD and on methods for developing and assessing effectiveness of practices and policies on individuals with IDD, their families, and their other service providers.

Winsor, J., Butterworth, J. (2008) Trends and milestones: Participation in integrated employment and community-based nonwork services for individuals supported by state disability agencies. Intellectual and Developmental Disabilities, 46(2), 166-168. NARIC Accession Number: J55022. Project Number: H133B031116.
Abstract: Article provides state-by-state data on participation in integrated employment; community-based non-work services; and facility-based services among individuals receiving supports from state intellectual disability/developmental disability program agencies. Trends from 1996to 2004 are discussed.

Koyanagi, C., Alfano, E. (2008) In the driver’s seat: A guide to self-directed mental health care. NARIC Accession Number: O17431. Project Number: H133B031109.
Abstract: Handbook provides an overview of self-directed care, a new approach to the delivery of community services to people with mental illnesses that allows consumers to manage their own care and control a budget to pay for their services and supports. Part I is a brief description of self-directed care. Part II offers advocacy strategies and tactics, while Part III is a more in-depth look at how self-directed care initiatives work and how they are funded. The appendices include fact sheets with information that would be useful to state policymakers and consumer advocates as well as a list of further reading and useful information on self-directed care.
This document is available online at naric.com

St. Pierre, C. (2008) Wellness and recovery — The vision and the pledge. Recovery & Rehabilitation, 4(3), 1-6. NARIC Accession Number: O17524. Project Number: H133B040026.
Abstract: This newsletter offers information, resources, and ideas for mental health services consumers and families, administrators, providers, and policymakers to begin actualizing the vision and the pledge to promote wellness for mental health services consumers. In direct response to the current health crisis facing people with psychiatric disabilities, participants at the 2007 National Wellness Summit for People with Mental Illness formulated a national vision for “a future in which people with mental illnesses pursue optimal health, happiness, recovery, and a full and satisfying life in the community through access to a range of effective services, supports, and resources.” The action outcome of the summit was the National Wellness Pledge “to promote wellness for people with mental illnesses by taking action to prevent and reduce early mortality by 10 years over the next 10-year time period.”
This document is available online at naric.com

The Disability Subgroup of the Campbell Collaboration (C2) celebrated its first anniversary in May. The group, chaired by two NIDRR researchers, conducts systematic reviews of interventions aimed at improving the lives of people with disabilities. The group is a Subgroup of the Education Coordinating Group. For more information, including how you can join, visit campbellcollaboration.org

Hodges, S., Ferreira, K. (2007) System implementation issue brief #4: Lessons from successful systems: Evidence-based practices and systems of care: Implementation matters. NARIC Accession Number: O16849. Project Number: H133B040024.
Abstract: This issue brief provides key findings on the relationship between evidence-based practices (EBPs) and systems of care based on data collected for Case Studies of System Implementation, a national study of strategies that local communities undertake to implement community-based systems of care. The purpose of the study was to understand how factors affecting system implementation contributed to the ongoing development of a system of care for children with serious emotional disturbance and their families. A description of the integration of EBPs into established system of care communities, lessons learned, and strategies for successful integration is presented.
This document is available online at naric.com

(2007) Final report: Research and training center on full participation in independent living. NARIC Accession Number: O17114. Project Number: H133B000500.
Abstract: This is the final report on the activities completed by the RTC on Full Participation in Independent Living from January 1, 2001 through June 30, 2007. The most important outcome-oriented goals were: (1) create recommendation to help consumers and centers for independent living survive disaster events, (2) use evidence-based research to guide disaster policies for people with disabilities, and (3) measure the effect of independent living services on community participation.

Walker, J., Gaonkar, R. (2007) Best practices for increasing meaningful youth participation in collaborative team planning. NARIC Accession Number: O17126. Project Number: H133B040038.
Abstract: Publication describes ways to increase the meaningful participation of youth in collaborative team planning meetings. These types of planning teams include individualized education plan, wraparound, foster care independent living programs, transition planning, and youth/family decision teams. The authors offer some information about how to create plans with youth, so that youth will see the plans as a means to help them move towards important life goals.
This document is available online at naric.com

Where Can I Find More? A quick keyword search is all you need to connect to a wealth of disability and rehabilitation research. NARIC’s databases hold more than 75,000 resources. Visit www.naric.com/research to search for literature, current and past research projects, and organizations and agencies in the US and abroad.