August 31, 2007 • Volume 7, Number 8


Network Related Resources

Elizabeth M. Boggs Center (NJ UCEDD) Curriculum Keeping It Real: How to Get the Support You Need for the Life You Want. Written by Kathy Roberson, MSW, Rick Blumberg, PhD, and Dan Baker, PhD, this transition curriculum is designed to teach young adults with disabilities how to get, evaluate, and manage the supports they need to reach their life goals. The student workbook has been translated into Spanish, and CDs for text readers are available. Companion Guides include: Parents’ Module (in English and Spanish), Teacher’s Guide, and “Budgeting Basics.” All documents are available in PDF format and can be downloaded and printed at no charge through the Boggs Center’s products webpage.

Indiana Institute on Disability and Community (UCEDD) Book Promotes Typical Lifestyles for Adults with Significant Disabilities. A new book by Indiana University Education Professor Patricia Rogan and Pamela Walker of Syracuse University offers an in-depth guide to promoting active, rewarding and meaningful lifestyles for adults with disabilities. Make the Day Matter!: Promoting Typical Lifestyles for Adults with Significant Disabilities (Brookes, 2007) compiles the most current best practices into a guidebook for supporting fulfilling lives for all adults.

New Hampshire Institute on Disability (UCEDD/LEND) Book: Little Ones Have Big Dreams Too: A Guide for Facilitators. Written by Ann Donoghue Dillon, this book outlines the basic facilitation techniques necessary for working through the person-centered planning process for children and youth in their early teens. The maps and illustrations will help the planning group to define its purpose, illustrate the child’s history, and include others in planning, establishing a vision, and delineating realistic outcomes and action steps. Little Ones Have Big Dreams Too is available for $10 through the IOD Bookstore.


Rural Institute (MT UCEDD) Publications

  • Seekins, T., Ipsen, C., & Arnold, N. (2007). Application of ecological momentary assessment methodology to measurement of participation. Rehabilitation Psychology, 52(3), 319-330.
  • Robinson-Whelen, S., Hughes, R. B., Taylor, H. B., Hall, J. W., & Rehm, L. P. (2007). Depression self-management program for rural women with physical disabilities. Rehabilitation Psychology, 52(3), 254-262.

Rehabilitation Psychology is available online at by subscription only.

Resources from the Institute on Community Integration (MN UCEDD)

  • Find, Choose & Keep Great DSPs: Toolkits for Families and People with Disabilities. These resources are designed to help families and people with disabilities find quality, caring, and committed Direct Support Professionals (DSPs). There are two different versions of the toolkit: one for people with disabilities and one for their family members and support providers. Access the version for people with disabilities here.
  • A Qualitative Study of the Experiences of Transition-Age Youth with Disabilities in Relation to SSI Redetermination (Policy Research Brief). A brief presenting selected findings from a study and literature review describing the experiences of Supplemental Security Income (SSI) recipients and nonrecipients and their families in relation to the age 18 re-determination process, and in relation to their efforts to achieve postschool employment, independent living, and related community participation outcomes. The study was conducted at the Institute.
  • Residential Services for Persons with Developmental Disabilities: Status and Trends through 2006 (Report). This report is providing statistics by state for the fiscal year ending June 30, 2006, with long-term trends, on residential services, settings, populations, and expenditures for persons with developmental disabilities in state, non-state, and Medicaid-funded residential programs in the U.S.  Resident characteristics, movement, and staffing patterns in large state residential facilities are included. Published by the Institute's Research and Training Center on Community Living.
  • National Validation Study of Competencies for Frontline Supervisors and Direct Support Professionals (Report). This report is from a study examining organizational workforce outcomes; characteristics of and differences between managers, Frontline Supervisors (FLS) and Direct Support Professionals (DSPs); and workplace competencies, training needs, and timing of training for FLS and DSPs. Published by the Institute’s Research and Training Center on Community Living.
  • Emergency Response Preparedness Self-Assessment Instrument. This online tool is designed for state disability services officials nationwide to determine the extent to which their agency's emergency preparedness plans address issues critical to the support and protection of persons with intellectual and developmental disabilities during disaster or crisis. Developed by a partnership between the National Association of State Directors of Developmental Disabilities Services and the Institute’s Research and Training Center on Community Living.

New Products and Resources from the National Center on Physical Activity and Disability (NCPAD), in association with Institute on Disability and Human Development (IL UCEDD)

  • Director's Column: Discrimination Takes a Different Turn for Athletes with Disabilities. Oscar Pistorius was born without the small lower bones in his legs, which required him to have two lower-extremity prostheses at the age of 11 months. After becoming one of the top athletes in the 2004 Paralympics, he decided to take on the challenge of competing in the 2008 Olympics in Beijing. With hard work and determination, Pistorius recently reached a new milestone in his career - running in open competition with athletes without disabilities with a goal of making the Olympic qualifying time. The International Association of Athletics Federations (IAAF) has since decided to ban Pistorius from any further competition until a scientific analysis is performed of his running motion.
  • Creating an Accessible Fitness or Wellness Facility (International Council on Active Aging (ICAA) Developer's Guide 2007). This article features information and tips on overcoming environmental and attitudinal barriers within your fitness facility that often discourage those with disabilities and/or activity limitations from participating.
  • Secondary Conditions: Building Your Own "Health Empowerment Zone". Secondary condition development and severity can be linked to the availability of health-promoting resources such as physical activity programs and nutritious foods. People with disabilities often face numerous barriers to participating in the physical and nutritional activities they need to maintain health and wellness. The Healthy People 2010 chapter, Disability and Secondary Conditions, suggests that the significantly lower rate of participation among people with disabilities may be related to environmental barriers.
  • Other Products and Resources
    • Before and After Fitness Center Makeover. This interactive tool helps you visualize how to make accessible changes in your fitness facility, including specifications as set forth by the U.S. Access Board Guidelines.

Research to Know

Study in American Journal on Mental Retardation Evaluates Divorce Among Parents of Children with Down Syndrome. A large-scale population study, one of the first with an epidemiological approach, studied families of 647 children with Down Syndrome and 361,154 of comparison children who did not have any disabilities, and found that divorce in families of children born with Down Syndrome is not as common as previously thought, but is higher in cases of less educated parents and those living in rural areas. The findings from the study can be used to counsel parents of newborns about the risks and timing of possible marital discord during the first few years of the child's birth, as well as to develop special programs for families in rural areas. Source: Urbano, Richard C. and Hodapp, Robert M. (2007). Divorce in Families of Children with Down Syndrome: A Population-Based Study. American Journal on Mental Retardation (Volume 112, No. 4).

Other Resources

Advancing the Nation’s Health: A Guide to Public Health Research Needs, 2006-2015. This Research Guide is a comprehensive public health research compendium developed by CDC scientists and external partners through extensive public engagement. The Research Guide will help us and our partners in public health identify knowledge gaps and foster collaborations to achieve even greater health impact. Additionally, the Research Guide will serve as a tool to identify critical research needed to achieve our Health Protection Goals in four interrelated areas: healthy people across all stages of life; healthy places and communities; preparedness against infectious, occupational, environmental, and terrorist threats; and improved global health.

"Ready" Instructional Videos. The US Department of Homeland Security's Ready Campaign has released three new demonstration videos designed to highlight the specific steps older Americans, individuals with disabilities and special needs, and pet owners should take to prepare for emergencies.

Health Care Language Services Implementation Guide. The Office of Minority Health at the U.S. Department of Health and Human Services is pleased to announce the release of the "Health Care Language Services Implementation Guide," an interactive web-based learning tool designed to help health care professionals plan, implement, and evaluate language access services (LAS) within their organizations.

CMS Releases Promising Practices Reports for Persons with Autism Spectrum Disorders. The Centers for Medicare and Medicaid Services (CMS) is pleased to announce the availability of three new promising practices reports that focus on Services for Individuals with Autism Spectrum Disorders (ASDs). These reports on ASDs are part of the CMS' participation in the Interagency Autism Coordinating Committee (IACC), created through the Combating Autism Act of 2006.

New National Registry to Help Family Members with Missing Relatives with Intellectual Disabilities. For family members and people with an intellectual disability, a new national registry developed by provides an opportunity to connect with missing relatives by providing basic contact information at. Representatives at will contact registered people in case of a match. For decades, parents of children with intellectual disabilities were advised to institutionalize their child and as a result, experts report that a high percentage of people with disabilities have no regular contact with family members. The FindFamily registry is one opportunity for missing family members to reunite.


EEOC Issues Guidance on Caregiver Discrimination. Two documents are provided:

Dual Diagnosis Partnership Launches Training Website. Through a partnership between the National Association for the Dually Diagnosed and Essential Learning, an online training initiative where behavioral health professionals can take courses and earn continuing education credits through the Internet, has been launched. A variety of courses to promote understanding and the gaining of new skills are being offered, including such new courses as:

    • Autistic learning disabilities approach
    • Dental and oral hygiene for individuals with mental illness
    • Behavior development for people with developmental disabilities
    • Sleep and mental health

HCBS Resources

  • Medicaid Infrastructure Grants Theme Page. The resources and tools found on this theme page are designed for or created by MIG grantees.
  • Family to Family Health Connections Theme Page. This new resource provides information for individuals and grantees interested in topics related to Family-to-Family Health Information Centers.
  • Housing Coordinated with Services Theme Page. This new resource provides information for individuals and grantees interested in topics related to housing coordinated with services.
  • Direct Service Workforce Theme Page. This new resource provides information for individuals and grantees interested in topics related to Direct Service Workforce Grants.
  • Reaching Out to Elderly Minorities, Immigrants, and Refugees. Iowa offered this web-based seminar to assist senior Medicare patrols in educating and reaching out to diverse older populations. There are three presentations which offer information on demographics and outreach. Certain specific populations are addressed including Asians, Eastern Europeans, East Africans, and Religious Communities, African Americans, Latinos, and Native Americans.

NICHY Resources

  • Basics for Parents Series. This set of publications provides information on raising a child with special needs.
  • NICHY Introduction to Procedural Safeguards on IDEA. NICHCY has just posted another training module online for the Building the Legacy training curriculum on IDEA, our nation's special education law. The module includes PowerPoint slide shows to use in training sessions, a detailed discussion of IDEA for trainers, and handouts for audience participants.
  • Children with Disabilities Enrolled by Their Parents in Private Schools Module. When IDEA was amended recently, significant changes were made in its requirements with respect to parentally-placed private school children with disabilities. Those changes are having an impact on school districts and State educational agencies (SEAs), including who's responsible for deciding and paying for special education services for this group of children.

Books & Reports

  • Tools for People with Developmental Disabilities to Achieve Best Quality of Life (AAIDD Book). Robert Schalock, James Gardner, and Valerie Bradley have written a book that offers individuals with intellectual disabilities tools for an improved quality of life within their communities and organizations. "Quality of Life for People with Intellectual and Other Developmental Disabilities" offers service providers and policy makers with "a quality assessment and improvement methodology grounded in person-centered needs and outcomes."
  • Lessons from Local Access Initiatives: Contributions and Challenges (Report). This new Commonwealth Fund report presents case studies of five notable programs targeting low-income adults under age 65.
  • Medicaid's Rehabilitation Services Option: Overview and Current Policy Issues (Report). The Kaiser Commission on Medicaid and the Uninsured released this report. The report was finalized just prior to publication by the Centers for Medicare and Medicaid Services (CMS) of a notice of proposed rulemaking (NPRM) in the Federal Register on August 13 that, among other things, would amend the definition of Medicaid rehabilitation services to prohibit payment for habilitation services.
  • Status of Education in Rural America (National Center for Education Statistics Report). This report brings together data from NCES and Census surveys and applies the new classification system to create a series of indicators on the status of education in rural America.

Various Resources

  • The Science of Mental Illness - A Training Module for Science Teachers. The lessons in this module present fundamental information about mental illnesses. The Science of Mental Illness has several objectives, including introducing students in grades 6-8 to the key concept that mental illnesses have a biological basis and are therefore not that different from other illnesses or diseases. Through inquiry-based activities, students gain a better understanding of what mental illnesses are and what they are not.
  • Youth Update: Best Practices Guide in Mentoring Youth with Disabilities. The resource is a guide on best practices and programs for mentoring young people with disabilities, as well as information on how mentoring programs can benefit youth with disabilities.
  • Center for Studying Disability Policy: A Resource for Decision-making. The center merges disability researchers from the Cornell University Institute for Policy Research and Mathematica. The mission of the new center is to inform disability policy formation with rigorous, objective research and data collected from the people disability policy aims to serve.
  • Developing a Great IEP Video, with Gary Mayerson. The latest in Autism Speaks' instructional video series, is now available. The free 12- minute video provides important information for parents who are encountering the IEP process for the first time, as well as tips for parents who have been through the process before.
  • Printable Immunization Information for Parents. The following topics are: Immunizations for Babies: A Guide for Parents, Children Ages of 11-19, Immunizations for Adults, and Complete Childhood Immunization Schedule.
  • Foreign Languages and Students with Learning, Hearing, or Vision Disabilities Tip Sheet. This tip sheet from the National Clearinghouse on Disability and Exchange offers strategies for optimizing students with learning, hearing, or vision disabilities’ world language and English language learning, and provides links to research articles related to learning disabilities, blindness, and deafness.
  • Addressing Racial and Ethnic Disparities at the Ground Level (Center for Health Care Strategies Issue Brief). The brief outlines practical strategies that states and managed care organizations are implementing to address inequalities in care. The brief draws from CHCS' national initiatives, supported by The Commonwealth Fund and the Robert Wood Johnson Foundation, to identify realistic solutions to reduce health care disparities and improve quality.

New Websites


National Association of Social Workers Research Webpage on Developmental Disabilities. This webpage focuses on developmental disabilities and social work’s response through research, collaboration, and advocacy. It provides an overview of the profession’s stance on developmental disabilities and its contemporary commitment to serving those with DD and their families, and offers links to resources and research-based publications.

Postsecondary Resources for Students with Intellectual Disabilities. The Postsecondary Education Research Center Project, coordinated by TransCen, has launched a website that provides information and resources on college options for students with intellectual disabilities. The site provides answers to frequently asked questions related to developing or expanding services for students with intellectual disabilities in college settings. It also provides access to a free online evaluation tool, the PERC Self-Assessment Tool that allows users to evaluate aspects of programs or services for students with intellectual disabilities on college campuses.

The Road to Freedom. The website provides current information and events relating to the Americans with Disabilities Act.

Aging and Disability Resource Centers (ADRC) Technical Assistance Exchange. This website that facilitates a state-to-state information exchange, includes information on grantees, examples of resources from the field, and issue briefs on selected topics.