April 30, 2007 • Volume 7, Number 4


Network Related Resources

Maternal, Infant and Child Health - Healthy People 2010 Midcourse Review.  The Healthy People 2010 Midcourse Review is now available online.  Chapter 16 highlights progress made toward meeting the Healthy People 2010 maternal, infant, and child health goals and objectives through the first half of the decade.

Maternal and Child Health Knowledge Path: Asthma in Children and Adolescents. This electronic guide presents a selection of current, high-quality resources about asthma in children and adolescents and the impact of asthma on homes, schools, and communities. The knowledge path also identifies tools for staying abreast of new developments in pediatric asthma research.

University of Southern California UCEDD Health Care Transition Publication.  New book, edited by Dr. Cecily Betz and Dr.  Wendy Nehring entitled "Promoting Health Care Transition for Adolescents with Special Health Care Needs and Disabilities".  This is the first text written on the topic.  It contains 17 chapters written on a variety of topics pertaining to health care transition planning using an interdisciplinary perspective.  Baltimore, MD: Brookes Publishing.

Rehabilitation of Individuals with Autism Spectrum Disorders.  The 32nd Institute on Rehabilitation Issues has published a monograph, "Rehabilitation of Individuals with Autism Spectrum Disorders."  Statistical information generated by the Rehabilitation Services Administration (RSA) for fiscal years (FY) 2003 to 2005 indicates that people with autism are severely underserved in terms of achieving employment outcomes by the state/federal vocational rehabilitation (VR) program.  Chapter authors include Dr. Lu Zeph (Maine Center for Community Inclusion and Disability Studies-UCEDD) and Dr. Cathy Pratt (Indiana Institute on Disability and Community-UCEDD).

Economics of Disability Curriculum from the Center for Disability Resources (SC UCEDD). The UCEDD developed a curriculum on the economics of disability that will be a required elective of the doctoral program in economics at the University of South Carolina.   This curriculum is freely available for use by the UCEDD network; please alert Dr. Richard Ferrante if you use it (in entirety or portion).

Alert! Newsletter from the Institute on Disability and Human Development (IL UCEDD).  The UCEDD invites you to read its Alert newsletter on Graduate Education.

Resources from National Center on Disability and Access to Education (NCDAE), in association with the Center for Persons with Disabilities (UT UCEDD)

  • Web Accessibility System Change: The Myths, Realities, and What We Can Learn From Two Large Scale Efforts (Article).  As web accessibility garners increased importance and attention, there is greater emphasis on making system-wide, rather than individual changes in our efforts to create a more accessible world.  This is accomplished through policy setting and implementation that places the importance of web accessibility alongside other web considerations.   Understanding the components involved in such large-scale change may aide others in their planning or execution of web accessibility policy.
  • Tips and Tools - Principles of Accessible Design (Fact sheet).  This fact sheet outlines 10 principles of design that, if applied, will make web and electronic content more accessible.


New Products and Resources from Wyoming Institute for Disabilities (UCEDD)'s Victims of Crime with Disabilities Resource Guide.

  • New Forensic Interviewing of Victims with Disabilities DVD Released!  After much anticipation, the "Victims with Disabilities: The Forensic Interview-Techniques for Interviewing Victims with Communication and/or Cognitive Disabilities" has been released by the US Department of Justice's Office for Victims of Crime.   This 57-minute DVD provides a specific set of guidelines for law enforcement officers, prosecutors, victim advocates, forensic interviewers, and others for interviewing adults and children with communication and/or cognitive disabilities.  An interactive companion discussion guide including a complete transcript of the DVD and a glossary of terms and concepts used in the film is also available.
  • Cases from the Headlines.  To bring attention to the serious issue of crimes against people with disabilities, the Resource Guide has begun developing an online collection of news stories involving victims with disabilities.  Selected from newspaper and news channel web sites, articles have been abstracted and posted in the Online Discussion section of the Resource Guide website.


Resources & Publications from the Indiana Institute on Disability and Community (UCEDD)

  • Sharing Information about Your Child with Autism Spectrum Disorders: What Do Respite or Alternative Caregivers Need to Know (Book).  Dr. Beverly Vicker, Speech Language Pathologist with the Institute's Indiana Resource Center for Autism, is the author of a new book that offers strategies to ease some of the apprehensions associated with parents communicating their child's behavior, daily living patterns, and food rituals to a person who may not be familiar with the child.
  • Increasing Social Engagement in Young Children with Autism Spectrum Disorders Using Video Self-Modeling (VSM) (Journal Article).  Dr. Scott Bellini, Assistant Director of the Institute's Indiana Resource Center for Autism, along with co-authors Jennifer Akullian and Andrea Hopf, both Indiana University Graduate Assistants, recently published the VSM research study in the Journal of School Psychology Review.   The primary purpose of this study was to examine the benefits of a VSM intervention in increasing the social engagement of young children with autism spectrum disorders.   The study expands previous research on VSM by measuring social interactions with same-aged peers in a natural setting rather than with adults in a controlled clinical setting.   For more information on this study, contact Dr. Bellini at (812) 855-6508.
  • Health and Safety Assessment.  The Indiana Child Care Health Consultant Program announces the availability of a tool to assess the health and safety of the environment and practices in child care programs.  A health and safety assessment and application manual, suitable for all child care settings, is available for download on-line.  Programs submitting a print or electronic copy of the assessment to the Indiana Child Care Health Consultant Program are eligible for child care health consultation to aid in the program's compliance with the assessment items.


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

  • DVD for Core and Stability Exercises for Stroke and Multiple Sclerosis.   NCPAD presents a great new resource for stroke survivors, persons with multiple sclerosis, and/or wheelchair users, as well as rehabilitation centers and fitness centers!  The DVD includes "Core and Stability Exercises for Stroke Survivors and People with Multiple Sclerosis," as well as "How to Prevent Rotator Cuff Injuries for Wheelchair Users," and is a compilation of exercises produced by NCPAD and the Rehabilitation Institute of Chicago.
  • Focus on Secondary Condition Prevention: Decreasing Secondary Conditions in Traumatic Brain Injury (TBI).  Several studies have reported that people with TBI are more likely to be sedentary, have greater health problems and experience substantially more barriers to physical activity participation compared to the general population.  Deconditioning exacerbates the physical and cognitive disabilities that persons with TBI experience, and persons with moderate to severe TBI may have a low tolerance for physical activity and become easily fatigued.
  • Resource on Fitness and Activities for People with Amputation.  


Research to Know 

Ground-breaking On-line Autism Research ProjectKennedy Krieger Institute (MD UCEDD) announced the launch of the Interactive Autism Network (IAN) - the first national online autism registry.  The MD UCEDD and Autism Speaks request your participation in the groundbreaking online autism project. Visit today and join over 3,000 families who have already registered.  IAN aims to link researchers, families, and the entire autism community to accelerate the pace of autism research. It consists of two complementary parts: IAN Research and the IAN Community.  IAN Research is the nation's largest online autism research effort.  Via secure online questionnaires, and from the comfort of their own home, parents of children with an Autism Spectrum Disorder can share valuable information only they possess about their child's diagnosis, behavior, family, environment, and services received.  Your participation will help IAN Research reach the initial goal of 10,000.

Researchers Identify a Novel Gene Mutation that Causes X-Linked Mental Retardation.  "This gene would not have been predicted to play a role in mental retardation based on the previous genetics work. It was found only because we were systematically looking at all the genes on the X chromosome irrespective of what they do," said Dr. F . Lucy Raymond of the Cambridge Institute of Medical Research, one of two investigators to discover a novel gene mutation that causes X-linked mental retardation for which there was no previously known molecular diagnosis. An article on the discovery has been published in the March 30 online issue of The American Journal of Human Genetics. Click here to read an abstract of the article.

Other Resources 

The Future of Disability in America (Institute of Medicine Report).  The report suggests that outdated policies are impediment for Americans with disabilities and recommends ways to remove barriers to care and assistive services.  To better understand disability in the United States, the Centers for Disease Control, the Department of Education, and the National Institutes of Health (NIH) asked the Institute of Medicine (IOM) to assess the current situation and provide recommendations for improvement, which culminated in the report The Future of Disability in America  This report concludes that immediate action is essential for the nation to avoid harm and to help people with disabilities lead independent and productive lives.

Demystifying Section 504 of the Rehabilitation Act (Department of Labor Publication).  DOL provides a new publication for faith-based and community organizations on serving people with disabilities.  Section 504 of the Rehabilitation Act of 1973 requires recipients of federal financial assistance, including faith-based and community organizations, to take certain positive actions to make their facilities and services accessible and available to people with disabilities.  The brochure is available free of charge.

April 2007 Issue of Disability Rights Online News (Department of Justice Publication).   Includes updates about DOJ's Civil Rights Division's activities in the area of disability rights.

Pre-Elementary Education Longitudinal Study (PEELS).  PEELS is funded by the National Center for Special Education Research in the U.S. Department of Education's Institute of Education Sciences.  PEELS is following a group of children who receive preschool special education services as they progress through the early elementary years.  

Administration for Children and Families Child Maltreatment ReportThe Child Maltreatment 2005 report findings reveal that during the Federal fiscal year 2005, an estimated 899,000 children in the 50 states, the District of Columbia and Puerto Rico were determined to be victims of abuse or neglect.

Reports from Government Accountability Office (GAO) 


Building the Legacy Training Modules on IDEA 2004 (National Dissemination Center for Children with Disabilities-NICHY).  NICHCY has posted three training modules online for the Building the Legacy training curriculum on IDEA 2004:

  • Module 6, Early Intervening Services and Response to Intervention
  • Module 11, Identification of Children with Specific Learning Disabilities
  • Module 12, The IEP Team: Who is a Member?

All three modules include a PowerPoint slide show to use in training sessions, detailed discussions of IDEA for trainers, and handouts for audience participants.  In all, 19 modules on critical IDEA topics will be available by summer 2007.  

Kaiser Foundation Transcripts Available for Medicaid & Medicare 101's. 


  • April 16, 2007: A Primer on the Health Insurance Program for Low-Income Americans; Cosponsored by the Kaiser Commission on Medicaid and the Uninsured



  • April 20, 2007: What You Really Need to Know; Cosponsored by the Kaiser Family Foundation


Four Issue Briefs Feature Lessons Learned from Established Systems of Care.  The "System Implementation Issue Briefs," produced by the Research and Training Center for Children's Mental Health, offers concrete examples from communities that have successfully developed systems of care.  Four issue briefs are currently available on-line:

  • System of Care Definition (Issue Brief #1): Provides an expanded definition of the system of care concept in an attempt to create dialogue around the definition.
  • Critical Factors in System of Care Implementation (Issue Brief #2):  Offers a model for how established system of care communities leverage change, with broad guidelines for use of implementation factors.
  • Leadership Qualities in Successful Systems of Care (Issue Brief #3): Describes characteristics of successful leadership within system of care communities based on research findings to date.  
  • Evidence-based Practices and Systems of Care: Implementation Matters (Issue Brief #4):­ Provides strategies for the integration of evidence-based practices into established system of care communities.

Resources from the Community Living Exchange Collaborative 

  • 2007 CMS New Freedom Initiative Conference Materials Available.  The 7th CMS New Freedom Initiative Conference was held March 5-7 in Baltimore. Presentations are available in both PDF and text formats. "Choice and Independence" is a key pillar of CMS' vision for a person-centered long term services and supports system for the future. The 2007 conference focused on the policies, programs, and tools-including opportunities authorized by the Deficit Reduction Act-available to shape and carry out the vision.
  • Reducing Nursing Home Utilization and Expenditures and Expanding Community-Based Options.  This paper explores and analyzes selected state approaches to engage nursing facility operators to be part of systems change activities that offer individuals additional, less restrictive choices to live more independently with appropriate supports. The strategies described offer other states lessons learned that may be replicated as part of a broader approach to meet changing and growing demand for home and community-based services. Efforts in IN, IA, MI, MN, NE, ND, NY, and WI are described.
  • Person Centered Planning (Flyer-Invites).  The Georgia QA/QI Real Choice Systems Change grant employed a variety of person centered planning (PCP) techniques in order to change services to fit the needs of consumers. This document is a variety of flyers and notices that the grantee used in order to recruit consumers to participate in its PCP focus and planning groups.
  • Person Centered Planning (Groups).  As part of the Georgia QA/QI Real Choice Systems Change grant, an evaluation of the Person-Centered Planning (PCP) program was conducted. Part of this includes the outline for planning and creating PCP groups, and a list of resources for effective use of PCP. Also included is the final survey given to PCP participants and information on sustaining person-centered planning. 
  • Person Centered Planning (Presentations).  These Person Centered Planning (PCP) presentations discuss how PCP allows consumers to plan for their preferences and do this throughout their lifespans. Presentations focus of the individual within his/her family and community and the relationships that affect PCP. The focus throughout is to identify personal preferences and to develop these to plan for the future. 

Various Resources

  • Equity: World Institute on Disability (WID) April Newsletter.  This edition's theme is Disability and Asset Building Communities Working Together.
  • Evidence Base for Cultural and Linguistic Competency in Health Care (Commonwealth Fund Report).  This report reviews the evidence base for the impact of cultural and linguistic competence in health and mental health care on health outcomes and well-being.  The authors conducted a structured search of Medline from January 1995 to March 2006 to identify primary research articles on health outcomes and well-being.
  • Who Are the Top Earners in the Medicaid Buy-In Program? (Working with Disability Issue Brief).  The Medicaid Buy-In program is a key component of the federal effort to make it easier for people with disabilities to work without losing health benefits. Authorized by the Balanced Budget Act of 1997 (BBA) and the Ticket to Work and Work Incentives Improvement Act of 1999 (the Ticket Act), the Buy-In program allows states to expand Medicaid coverage to workers with disabilities whose income and assets would ordinarily make them ineligible for Medicaid. As of June 30, 2006, 33 states reported covering 75,443 individuals in the Medicaid Buy-In program.
  • Latinos with Disabilities in the United States: Understanding and Addressing Barriers to Employment (Executive Summary).  This webpage from Proyecto Visión provides an executive summary of a report examining the unique obstacles that Latinos with disabilities encounter in employment and offering suggestions to overcome them. Specifically, the report suggests improving vocational rehabilitation programs, reconsidering the disability community's approach to Latinos, integrating individuals with disabilities into the Latino community, and increasing the overall visibility level of Latino leaders with disabilities. To purchase a copy of the report, contact Robin Savinar at (510)251-4325.
  • Self-Determination Lesson Plan Starters (Lesson Plan Starters).  The Self-Determination Synthesis Project at the University of North Carolina at Charlotte has created these lesson plan starters based on data-based research studies in which students or adults were taught a new self-determination skill or set of skills.  The lesson plan starters were developed based on the description of the intervention and data collection procedures provided in each study and includes lesson objectives, setting and materials, lesson content, teaching procedures, evaluation methods, and, if a published curriculum is referenced in the lesson plan, cost and contact information for the curriculum.
  • The Lighter Side of Special Education: Parents and Kids (Article).  Before you read this article by Aimee Gilman, be warned. As Aimee says, "If you are among those humor-challenged individuals who believe there is absolutely nothing funny about disabilities, I urge you to stop now and go back to biting your nails down to your elbows."  Aimee is an attorney who represents children with disabilities and the parent of a child with a disability.
  • Medicare Advantage Special Needs Plans (SNP).  Special Needs Plan enrollment as of March 2007 has been updated using data from the Centers for Medicare and Medicaid Services (CMS). Data on enrollment and number of plans offered are available by plan type for all states and the nation.  Resource provided by the Kaiser Foundation.
  • Summer Camp Resources & Information from SchwabLearning

New Websites 

Enhanced Website Provided by DC UCEDD.  The Georgetown University Center for Child and Human Development UCEDD is pleased to announce that it has enhanced its website.  Check out the following features:

  • An "In My Own Words" page contains stories written by people with developmental disabilities from diverse cultural and linguistic backgrounds and their families about their life experiences. The stories are available in both English and Spanish, and more will be posted soon.
  • A "Health Articles" page that contains downloadable fact sheets
  • A Legislative Updates page
  • Many resources, publications and links
  • Training materials on cultural and linguistic competence in developmental disabilities are under development and will soon be posted.  

The Evaluation Group.  The Evaluation Group at the Institute on Community Integration (MN UCEDD) is a cadre of specialists offering evaluation services to programs and organizations that serve people with disabilities and other special needs, including schools, state and local education agencies, human service agencies, and workforce development agencies. Its Web site provides information about its services and approach, staff, and past projects, as well as contact information.

Ability OnlineAbility Online offers emotional support and skill development within a monitored environment to 3,330 exceptional young members ages 11-24 who have physical disabilities, intellectual disabilities, or chronic illnesses.  Ability Online is an extraordinary and absolutely free Internet community.  

Champions for Inclusive Communities.    ChampionsInC supports states and communities implementing community- based systems of services and supports for children and youth with special health care needs (CYSHCN) and their families. 

Law, Health Policy, and Disability Center.  The Law, Health Policy, and Disability Center is an emerging leader in law, technology, education and research. Based at the University of Iowa College of Law, with offices in Washington, DC, the center concentrates on public policy and its impact on persons with disabilities, with an emphasis on employment, self-determination and self-sufficiency.  

Association for Science in Autism Treatment (ASAT).  ASAT is committed to science as the most objective, time-tested and reliable approach to discerning between safe, effective autism treatments, and those that are harmful or ineffective.  ASAT supports all scientifically sound research on the prevention, treatment and cure of autism, as well as all treatments for autism that are shown to be effective through solid scientific research, regardless of discipline or domain.  

Get AT Stuff-Assistive Technology Exchange.  The goal of getATstuff is to help get Assistive Technology devices that are no longer being used into the hands of people who need and can benefit from them.  While the Exchange is primarily for New Englanders, it does accept entries from neighboring states. The program is designed to facilitate equipment exchange between individuals and is not for vendors or distributors to buy and sell equipment.