AUCDigest

February 27, 2007 • Volume 7, Number 2

RESOURCES

Network Related Resources

ADD Update. The 2007 winter and spring issue, developed by the Administration on Developmental Disabilities, is currently available. The Wyoming INstitute for Disabilities (UCEDD) and Vanderbilt Kennedy Center (TN UCEDD) are highlighted in this issue.

Oral Health Professional's Guide to Serving Young Children with Special Health Care Needs (Free Online Course). This web-based continuing education course is designed for oral health professionals (dentists, dental hygienists, and dental assistants). The Web-based curriculum was prepared by the National Maternal and Child Oral Health Resource Center at Georgetown University and designed by the Center for Advanced Distance Education at the University of Illinois at Chicago with support from the Maternal and Child Health Bureau. Four CE credits through the Indian Health Service or through the American Dental Hygienists' Association will be awarded upon successful completion of the course.

Mental Retardation and Developmental Disabilities Research Reviews (Volume 13, Issue 1, 2007). The latest issue of MRDD Research Reviews on Language and Communication Development was edited by Dr. Steve Warren of the Schiefelbusch Institute for Life Span Studies (KS UCEDD) and Dr. Len Abbeduto at the Waisman Center (WI UCEDD). This edition consists of the following eleven (11) articles:

1. Introduction to communication and language development and intervention
2. Language and communicative development in Williams syndrome
3. Early communication development and intervention for children with autism
4. Language and communication development in down syndrome
5. Language development and fragile X syndrome: Profiles, syndrome-specificity, and within-syndrome differences
6. Language phenotypes and intervention planning: Bridging research and practice
7. The state of research and practice in augmentative and alternative communication for children with developmental/intellectual disabilities
8. Differential treatment intensity research: A missing link to creating optimally effective communication interventions
9. Word-attack skills in individuals with mental retardation
10. The study of autism as a distributed disorder
11. Genes, language development, and language disorders

Vanderbilt Kennedy Center (TN UCEDD) Tennessee Disability Pathfinder. At the UCEDD's Tennessee Disability Pathfinder, families are able to receive statewide bilingual disability information and referrals. All disabilities and ages are covered. Pathfinder has phone, web, and print resources in English and Spanish to connect the Tennessee disability community with service providers. Referral services, free of cost, are provided to person with disabilities, family members, service providers, and advocates. Pathfinder publishes the Tennessee Disability Services & Supports Directory, a statewide directory in three regional volumes. The Pathfinder site also has easy to access topics with state and national resources, e.g., Employment, Housing; and a calendar of disability-related events. Pathfinder is a project of the VKC UCEDD and the Tennessee Council on Developmental Disabilities. For more information, contact 1-800-640-INFO [4636] or [email protected].

 

Current issue of the Intellectual & Developmental Disabilities Journal Available. Several of the articles published in the current issue were written by representatives of the AUCD Network:

• Cell Phone Use by Adults with Intellectual Disabilities - Dr. Diane Nelson Bryen, Allison Carey and Mark Friedman (Institute on Disabilities, PA)
• Project MED: Effects of a Medication EDucation Booklet Series for Individuals With Intellectual Disabilities - Dr. Michael G. Aman, Betsey A. Benson, Cristan A. Farmer*, Kristy L. Hall*, and Krista M. Malone (Nisonger Center, OH; *Graduate Students)
• Including Students With Moderate and Severe Intellectual Disabilities in School Extracurricular and Community Recreation Activities - Dr. Harold L. Kleinert, Sally Miracle, and Dr. Kathy Sheppard-Jones (Interdisciplinary Human Development Institute, KY)

New Publications from Around the AUCD Network

 

1. Quick-Guides to Inclusion: Ideas for Educating Students with Disabilities (2nd Ed.) Developed by Three UCEDDs. Ten faculty members the Center on Disability and Community Inclusion (VT UCEDD), Institute on Disability (NH UCEDD) and Kansas Center on Developmental Disabilities (KS UCEDD) have collaborated with 31 other authors from across the country to produce this second edition publication, scheduled for publication in April 2007 by Paul H. Brookes Publishing. The audience for this book is primarily general education teachers and other school leaders who are collaborating with special educators, related services providers and families to successfully include students with a full range of disabilities in general education classes.
2. Indiana Institute on Disability and Community's (UCEDD) First Responder Training: Strategies for Interacting with Individuals on the Autism Spectrum. The Indiana Resource Center for Autism at the UCEDD was partially funded by the Autism Advocates of Indiana to create training modules to inform First Responders (e.g., fire, police, and paramedics) about issues and strategies for interacting with individuals on the spectrum. Through collaboration with Homeland Security, eleven (11) regional trainings have been scheduled to begin to disseminate this information across Indiana. These training are designed to build capacity of statewide training entities, parent support group leaders, and autism team leaders to deliver this information in their local communities. Material development reflects a collaborative statewide effort with guidance from Dennis Debbaudt, a nationally recognized expert in First Responder training. For more information, contact Brian Ketzner at (812) 855-6508 or visit the ACCESS Autism website.
3. New Publication from the Institute on Disabilities (PA UCEDD). Dr. Mary Segal, research scientist, was author of an article published in the journal Human Genetics. Co-authors were Dr. Marcia Polansky, Associate Professor of Public Health at Drexel University, and Dr. Pamela Sankar, Associate Professor of Medical Ethics at the University of Pennsylvania. Full citation: Segal, M., Polansky, M. & Sankar, P. (2007). Predictors of uptake of obesity genetic testing among affected adults. Hum Gen 2007; 120: 641-652.
4. New Publication from the Westchester Institute for Human Development (NY LEND Program). Healthy Development: Health and Wellness for Families is a new publication written by LEND Faculty Dr. Wendy Breitner and Anne Farrell, former LEND Faculty. It is a handbook about child development designed to be used by caseworkers and others working closely with families to help promote child and family well being. The handbook describes typical developmental expectations for each age group, warning signs for developmental lags and information about referrals for assessments and services for each age group. It also describes parenting practices that promote healthy development at each developmental stage. Kudos to both Wendy and Anne for a job well done! Thank you both for developing an excellent and useful tool for both families and professionals!
5. New Publications from the Rural Institute (MT UCEDD). Rosemary B. Hughes is on the research staff of the Research and Training Center on Disability in Rural Communities.
• Hughes, R.B., Nosek, M., & Robinson-Whelen, S. (2007, January/February). Correlates of depression in rural women with disabilities. Journal of Obstetric, Gynecologic and Neonatal Nursing, 36, 1, 105-114.
• Nosek, M.A., Hughes, R.B., Taylor, H.B., & Taylor, P. (2006, September). Disability, psychosocial, and demographic characteristics of abused women with physical disabilities. Violence Against Women, 12, 9, 1-13.

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

1. Disability Groups Publish Legislative Goals for the 110th Congress - Includes Criminal Justices Goals. The goals set by the Arc of the United States, United Cerebral Palsy (UCP), American Association on Intellectual and Developmental Disabilities (AAIDD), American Network of Community Options and Resources (ANCOR), and AUCD are organized into a three tiered system: critical goals, priority goals, and additional important goals. Although criminal justice issues are not listed as critical goals, the report does include many important issues related to ending violence and crimes against people with disabilities.
2. Safety Issues in the Lives of Children with Learning Disabilities (Study). Quantitative and qualitative data were collected from 116 special education students aged 11-17 years (61 females and 55 males) who had been identified as 3 or more years behind their peers in all aspects of the curriculum. The study confirmed the vulnerability of children with learning disabilities to the risks of drugs, violence, psychological bullying, pornography and sexual abuse. Significant levels of violence were found in both schools and homes. The findings suggested those children with learning disabilities require more vigilant and more intensive, explicit forms of protection than other children. Full Citation: Briggs, Freda. Safety Issues in the Lives of Children with Learning Disabilities. Social Policy Journal of New Zealand, 29 (2006): 43 - 59.
3. 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.
4. Recent Products Added to the Search Resources Database
• Unequal Justice for South Carolinians with Disabilities: Abuse and Neglect Investigations
• Forensic Interviewing Skills for Working with Child Abuse Victims with Cognitive and/or Communication Impairments
• Interagency Collaboration Guidebook: A Strategic Planning Tool for Child Welfare & Part C Agencies
• Justice Advocacy Guide: An Advocate's Guide on Assisting Victims and Suspects/Defendants with Intellectual Disabilities
• Serving Persons Who Have Developmental Disabilities in the Healthcare Setting
• The School Violence Dilemma: Protecting the Rights of Students with Disabilities While Maintaining Teachers' Sense of Safety in Schools
• Drawing the Line: Professional vs. Unprofessional Behavior in the Workplace When Working with People Who Have Developmental Disabilities

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

• Physical Activity to Reduce Obesity in Children with Disabilities (Fact Sheet). Children and adolescents with disabilities have a higher prevalence of overweight compared to their non-disabled peers. This health risk can lead to a greater number of obesity-related secondary conditions and can impose significant personal and economic hardship on the child and family. Several studies have reported that people with disabilities are more likely to be sedentary and experience substantially more barriers to physical activity participation compared to the general population.
• Karate for Persons with Disabilities (Video Fact Sheet). Martial Arts is a term that encompasses Karate, Judo, Tai-Chi, and Taekwondo, to name a few. Karate, one of the oldest types of Martial Arts, focuses on both physical and mental power. It combines smooth, flowing movements with sudden kicks and strikes. Karate covers a broad spectrum of self-defense activities, and is practiced by men, women, and children of all ages and abilities. People practicing karate do not have to have full use of their limbs, and it can be practiced from a sitting position or even from the floor. Karate only requires some ability to move, a desire to learn, and a commitment to hard work.
• Core and Stability Exercises for Stroke Survivors and People with Multiple Sclerosis (Video Fact Sheet). 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, which 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," is a compilation of exercises produced by NCPAD and the Rehabilitation Institute of Chicago (RIC), and funded by the Christopher and Dana Reeve Paralysis Resource Center.

Resources from the Partners of the Institute on Community Integration (MN UCEDD)

• Use of Chunking and Questioning Aloud to Improve the Reading Comprehension of English Language Learners with Disabilities (Report). This report is examining how an instructional reading strategy specifically identified by classroom teachers who work with English language learners with disabilities could improve the students' grade-level standards-based reading achievement. It is important to examine how educational specialists (in this case, a special educator and speech-language specialist) might use teacher-identified reading strategies in more individualized settings such as a special education resource classroom. Published by the Institute's National Center on Educational Outcomes.
• Impact: Feature Issue on Supporting Success in School and Beyond for Students with Autism Spectrum Disorders (Newsletter). This issue provides information on strategies and resources that can assist educators, families, and others to support the academic, social, and vocational success of PreK-12 students with Autism Spectrum Disorders.
• NCSET Publications Catalog. This resource is a comprehensive list of the publications developed by the Institute's National Center on Secondary Education and Transition (NCSET), including Essential Tools, Information Brief, Issue Brief, NLTS2 Data Brief, Parent Brief, Policy Update, Research to Practice Brief, What Works Data Brief, and other publications and resources.
• Frontline Initiative (Newsletter) Highlights Credentialing of Direct Support Professionals. This issue describes the National Alliance for Direct Support Professionals' (NADSP) new credentialing framework while also profiling various credentialing programs and credentialed DSPs in different states. Published by NADSP and the Institute's Research and Training Center on Community Living. Cost: $10 per year for a 3-issue subscription. Available at: Frontline Initiative, P.O. Box 13447, Minneapolis, MN 55414 (make checks payable to Frontline Initiative).

 

Researchers Discover a Fourth, Completely New Genetic Clue on the Occurrence of Alzheimer's Disease. Variations in a gene known as SORL1 may be a factor in the development of late onset Alzheimer's disease, an international team of researchers has discovered. The research was mainly funded by the National Institute on Aging and the National Human Genome Research Institute.

Other Resources

Assessing the Impact of Katrina on Persons with Disabilities (Report). This research, funded by the National Institute on Disability and Rehabilitation Research, represents the most recent in-depth effort to understand how persons with disabilities prepared for, reacted to, and recovered from the devastating impact of the storm in portions of the Gulf Coast most affected. In addition, this work sought to understand the roles and relationships that Centers for Independent Living (CILs) played in all phases of the disaster, with a special emphasis on their relationship to the emergency management system.

Centers for Medicare & Medicaid Services (CMS) Launches Technical Assistance Database. CMS has just launched an exciting new database to showcase the efforts of many of the technical assistance providers serving CMS grantees. The database will contain important information regarding existing and upcoming research products, conferences, and significant meetings as well as a wide variety of toolkits, surveys, and policy briefs, intended to be of interested to the disability and long-term care community. All stakeholders will be able to view the database. CMS grantees, however, will be given access passcodes to enable them to post requests for technical assistance to the vast cadre of experts supporting CMS initiatives. The user name for the database is TAdatabase and the passcode is Readonly#1.

Tool Kit on Teaching and Assessing Students With Disabilities. Designed to assist parents and states in their efforts to work together to raise the achievement of all students with disabilities, the Department of Education Tool Kit offers a collection of resources on the same substantive areas addressed, including assessment, instructional practices, behavior and accommodations. These new documents were written specifically for parents and include information they need as they work with schools to ensure that their children are receiving a quality education.

Report Highlights Racial and Ethnic Disparities in Opportunity in U.S. Metropolitan Areas. Children Left Behind: How Metropolitan Areas Are Failing America's Children profiles the 100 U.S. metropolitan areas with the largest child populations and reflects a picture of disparities across many dimensions of well-being. The report is the first in a series of reports derived from diversitydata.org, a new Web site developed by the Harvard School of Public Health in conjunction with the Center for the Advancement of Health, and with support from the W. K. Kellogg Foundation. The Web site uses data from multiple sources to bring together a range of indicators on many dimensions of well-being including housing, neighborhood conditions, residential integration, education, and health. The report concludes with a discussion of the policy implications, a brief overview of the levers that might be employed to improve prospects for children, and a detailed description of several promising models for action.

Federal Council Celebrates 3rd Anniversary of United We Ride. The Federal Interagency Coordinating Council on Access and Mobility met to review accomplishments since 2004, when the Executive Order on Human Service Transportation was signed by President Bush. During the meeting, the Council released a Progress Report: Implementation of Executive Order 13330. The report outlines collective accomplishments, including the adoption of two policy statements, as well as the United We Ride Logic Model and Performance Measures on coordinated human service transportation. In addition, the Council launched ONE VISION: ONE CALL, a new campaign to simplify access for consumers in every community.

Resources from the Community Living Exchange Collaborative

• Impact of Medicare Special Needs Plans on State Procurement Strategies for Dually Eligible Beneficiaries in Long-Term Care. Special Needs Plans (SNPs), authorized by the Medicare Modernization Act, offer state Medicaid programs a new potential vehicle for coordinating Medicare and Medicaid benefits for dual eligibles. This report investigates the degree to which states (and plans) are using this option to develop more fully integrated Medicare-Medicaid models for dual eligibles needing long-term care services.
• State Policy in Practice: Challenges Posed by Waiver Waiting Lists. More states are using money follows the person and institutional transition programs to rebalance their long-term care systems. One major challenge they face is the decision to give certain individuals priority access to services when there are home and community-based services (HCBS) waiver waiting lists. This State Policy in Practice brief describes how selected states develop and maintain waiting lists and whether they are giving service priority to certain groups of people on a waiting list.
• Advocating Through Letter Writing. When accessing health care for children, there is another level of advocacy and information needed. Learning to advocate, learning to research and learning how to communicate with multiple systems are all skills to be acquired. Many times we are asked to "Put your request in writing"; for the parents of children with disabilities, there are even more reasons. The New York CMS F2F grantee developed this booklet with hints, suggestions or models for families to use when writing letters.
• Social Marketing Approach to Challenging Stigma. This article is aimed at developing tools to help human service providers form partnerships to address and prevent stigmatization of people with disabilities. The Idaho State University Institute of Rural Health (ISU-IRH) developed two anti-stigma social marketing campaigns that incorporated methods to empower people, campaign design and distribution, and methodology for evaluating the effectiveness of the campaign.

 

Various Resources

• Journal Name Change Announced. After almost 5 decades of being called Mental Retardation, this influential journal in special education changed names to Intellectual & Developmental Disabilities under the leadership of Editor Steven J. Taylor. The new name comes close on the heels of the name change of its publisher, the American Association on Intellectual and Developmental Disabilities, formerly AAMR, the world's oldest organization representing professionals in developmental disabilities.
• Children in Vulnerable Families: Facts and Figures (Fact Sheet). A new fact sheet from the Urban Institute reviews trends in some of the most significant risk factors in families today: child maltreatment, domestic violence, children's disabilities, substance abuse, and parental mental illness.
• National Children's Study Announces Plans to Expand Study and Begin Recruitment (February Update). The National Children's Study is moving forward and stepping up preparations to recruit eligible women and their families. As a first step in the Study's expansion, the National Institute of Child Health and Human Development at the National Institutes of Health will post a Request for Proposals (RFP) in the coming weeks to award contracts to 15 to 20 new Study Centers. These Centers will manage operations in up to 30 additional Study locations. In total, the Study has designated 105 locations across the United States where it will recruit and enroll eligible participants, and track them from before birth until their 21st birthdays.
• Medicaid Spending Growth Sustained by Expected Increases in Government Revenues (New Study). As Congress prepares to debate the Presidents budget and looks ahead to address the growing federal deficit and the future sustainability of Medicare, Medicaid, and Social Security, a new study of future funding requirements for Medicaid by the Kaiser Family Foundations Commission on Medicaid and the Uninsured (KCMU) projects a less dire situation than suggested by conventional wisdom. The study concludes that expected growth in government revenues is likely to be large enough to sustain Medicaid spending increases over the next 40 years, while also allowing substantial real growth in spending for other public services.
• SCHIP Reauthorization: Weighing the Options (Report). At the end of the 2007 fiscal year, congressional authorization for the State Children's Health Insurance Program (SCHIP) is set to expire. In a new report prepared for The Commonwealth Fund Commission on a High Performance Health System, the report examines the array of policy options that Congress is likely to consider for SCHIP, a program widely hailed for assisting children whose families have too much income to qualify for Medicaid but too little to afford private insurance.
• Toolkit on Reducing Disparities in Medicaid Managed Care. A new Commonwealth Fund-supported toolkit developed by the Center for Health Care Strategies, aims to reduce racial and ethnic disparities in Medicaid managed care by offering case studies, as well as "key lessons" on using data to identify disparities; developing patient-centered approaches to care; and collaborating with key stakeholders.
• Proyecto Visión Released Report Outlining Priorities to Improve Employment Opportunities for Latinos with Disabilities. Latinos with Disabilities in the United States: Understanding & Addressing Barriers to Employment presents a snapshot of this growing population. It outlines factors affecting the extent of participation, and degree of success, of disabled Latinos in the service delivery system; highlights innovative research and employment projects that are working to reduce barriers; and presents profiles of individuals and families who have attained success and others who have fallen between the cracks.

New Websites

Office on Disability. The Department of Health and Human Services Office on Disability (OD) is pleased to announce the launch of the completely redesigned website. The new website provides comprehensive yet easy-to-access information supporting the seven domains; housing, education, information technology, transportation, health, employment, and community integration; identified by the President's New Freedom Initiative-plus, information on advocacy, entitlements, and emergency preparedness.

National Institute of Nursing Research (NINR). Want to find out how nursing research is working to improve the health of the nation? Access to information about this vital area of science and the programs of NINR, one of 27 Institutes and Centers at the National Institutes of Health, just got easier with the recent launch of the Institute's improved website. Improved design, graphics, and navigational tools will help visitors to the website more easily find a wide array of information about NINR, including the NINR history, mission, and budget; capsules of significant research findings; and upcoming NINR events. A new feature added to the website gives visitors access to NINR podcasts of pre-recorded audio and video presentations, interviews, and meetings that can be viewed or listened to from their computer or portable media player.

Center for Early Literacy Learning (CELL). CELL is a research-to-practice technical assistance center funded by the U.S. Department of Education, Office of Special Education Programs, Research to Practice Division. Its main goal is to promote the adoption and sustained use of evidence-based early literacy learning practices by early childhood intervention practitioners, parents, and other caregivers of young children, birth to five years of age, with identified disabilities, developmental delays, and those at-risk for poor outcomes.

Rural Health Care Pilot Program. The Federal Communications Commission (FCC) has announced plans for a new Rural Health Care (RHC) Pilot Program to facilitate the creation of a nationwide broadband network that will support dedicated to health care, connecting public and private non-profit health care providers in rural and urban locations. The FCC has also established a new web site for the RHC Pilot Program that provides extensive information about program goals, applying for funding, etc.

Learning Disabilities and Assistive Technologies. Assistive technology is an important piece of the whole support system individuals with learning disabilities require to achieve success. Exactly what is assistive technology (AT)? AT is any item, piece of equipment, or product that is used to increase, maintain or improve the abilities of individuals with disabilities: tools to promote independence across all areas of daily living. These common tools extend from low-tech, low-cost items to high-tech, more expensive devices.

DisabilityWORK.com. Access Solutions, LLC has announced the launch of DisabilityWork.com, a service that brings employers and people with disabilities together. This site consists of several different services for both employers and people with disabilities. Employers can search a database of resumes to find prospective candidates to fill needed positions. Employers can also post their job openings on this website and utilize DisabilityWork.com's headhunting services. People with disabilities not only can post their resumes on this website, but they also can make use of an array of services ranging from resume-writing and career coaching to job placement and job coaching.

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