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AUCDigest

August 15, 2006 • Volume 6, Number 64


 

Forging New Partnerships for New Challenges Through Research, Education and Service

October 29-November 1, 2006


RESOURCES

Network Related Resources

Journal Article: "Satisfaction with Primary Health Care Received by Families of Children with Developmental Disabilities."  This Journal of Pediatric Health Care article was developed and written by faculty members of the LEND program at the Strong Center for Developmental Disabilities.  The article evaluates the perceptions of families of children with developmental disabilities regarding their primary care physicians and to determine if differences exist for different conditions.  The article can be read in its entirety through the AUCD LEND Family Faculty Resource Page.

"Little Ones Have Big Dreams Too: A Guide for Facilitators," developed by the Institute on Disability (NH UCEDD). This exciting new illustrated and user-friendly guide is designed for individuals interested in gaining greater knowledge around person-centered planning for children from preschool through early teens. The guide contains helpful graphic maps accompanied by a parent's perspective and offers readers a chance to follow these maps in an organized sequence.  For more information or to order a copy, please contact the UCEDD at 800-378-0386.

Institute on Disability and Human Development (IL UCEDD) Evaluates Impact of Physical Activity on Special Olympics Athletes.  The Health Promotion Pilot Programs Evaluation report showed positive outcomes after participating in health promotion programs including: improved perceived health; reduced body weight; increased fiber intake; improved self-confidence; more positive attitudes toward exercise; and decreased barriers to exercising.

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

Resources:  National Center on Physical Activity and Disability (NCPAD) is associated with the Institute on Disability and Human Development (IL UCEDD)

  • Focus on Secondary Condition Prevention: Pain is a Major Secondary Condition among People with Spinal Cord Injury.  Pain is a commonly reported and functionally limiting secondary condition for people with many types of disabilities, including SCI. It can be classified as chronic (long-term or persistent pain) or acute (short-term with an easily identifiable cause), and severity can be measured by verbal report using a visual analog scale (i.e., numerical pain rating) and by functional limitations associated with the pain.
  • Active and Inclusive Family Vacations.  Active family vacations are a great way to continue to include physical activity in the daily lives of all family members.  An active family vacation is not just an ordinary vacation; rather, it emphasizes activities such as walking/wheeling tours of a city or hiking a specific trail when camping.  If a member of your family has a disability, there are a few things that you may need to consider when planning fun and inclusive activities.
  • Rectech's National Users with Disabilities Group Exercising (NUDGE): GAMECycle Exercise Device.  The thought behind development of the GAMECycle was that if a person forgot he or she was exercising or having fun during the exercise session, he or she would exercise longer and at a higher intensity.  GAMECycle is an interface between an arm ergometer and a game cube that enables the person cycling to play a computer game, such as Need for Speed.  Various research has already been completed examining the efficacy of the GAMECycle, including cross-sectional studies that show people with SCI were able to develop a training zone effective for exercise. An ongoing study includes providing GAMECycles in one's home for an extended period of time to determine if exercise habits improve along with general health and wellness.
  • Nutrition Spotlight: Nutrition Suggestions for Spinal Muscular Atrophy.  Spinal muscular atrophy (SMA) is a genetic disorder affecting the part of the nervous system that controls our voluntary muscle movement.  SMA also involves the loss of nerve cells (motor neurons) in the spinal cord and is considered a motor neuron disease. 
  • Project GAIN: A Model for Best Practices in Inclusive Recreation Programs.  True inclusion occurs when individuals with and without disabilities are valued for their individuality and are active participants in the social fabric of their communities. Recreation activities are a vehicle through which true inclusion can be achieved due to the tendency of such activities to lead to other social ventures.

Research to Know

National Survey of Child Welfare Administrators on Identifying Children with Developmental Disabilities.   A national survey of child welfare administrators reveals that Child Protection Services (CPS) systems are not well equipped to serve children with developmental disabilities and are failing to identify affected children. Recommendations are made for improved screening procedures and staff training to ensure competent assessment and services for these children.  Full Citation: Shannon, P. and Agorastou, M. (2006). "Identifying Children with Developmental Disabilities Receiving Child Protection Services: A National Survey of Child Welfare Administrators."  Families in Society, 87: 351-358.  Marie Agorastou, MSW, is at the New Hampshire Institute on Disability (UCEDD).

Researchers Discover One Gene Contributing Significantly to Mental Retardation in Individuals with Down Syndrome.  Researchers at Stanford University have discovered that one specific gene on the chromosome responsible for Down Syndrome is responsible for the cognitive impairment that results from having the Syndrome.  This discovery allows for possible treatments to focus on that specific gene rather than the entire chromosome.  Read a press release on the discovery from Stanford University.  Read an article on this discovery published in Neuron. Read a statement from the National Down Syndrome Society on this discovery.

In Utero Exposure to DDT Causes Developmental Delay, New Research Shows.  A federally-funded research project by the University of California, Berkeley scientists involving the children of women who recently emigrated from Mexico to California's Salinas Valley shows that the pesticide DDT does serious harm to the human brain.   The study measured blood levels of DDT and one of its breakdown products, DDE, in 360 pregnant women. For each tenfold increase in DDT levels measured in the mother, the team found a corresponding 2-3 point decrease in the children's mental development scores at 12 and 24 months.  Read a press release through UC Berkley.  Read an abstract on the study published in the July 2006 issue of Pediatrics.

Other Resources

October is National Disability Employment Awareness Month: Poster Available.   The 2006 NDEAM poster carries the theme, Americans with Disabilities: Ready for the Global Workforce.  A young man with a developmental disability is posed with a global backdrop.  Using a headset, he is responding to a telephone call.  The words "October is National Disability Employment Awareness Month" appear at the bottom of the poster.  To request a 20" x 30" or a 10" x 15" paper version of this poster, please e-mail your name, complete mailing address and number of posters requested to [email protected], or call 202-693-7880.

New EEOC Publication Addresses Employment Rights of People with Hearing Loss.  Cari M. Dominguez, Chair of the US Equal Employment opportunity Commission (EEOC), announced the issuance of a new question-and-answer fact sheet on the application of the ADA to job applicants and employees who are deaf or who have hearing impairments.

GAO Reports

Disaster Preparedness Resources from the American Academy of Pediatrics (AAP)

Reports, Guides, Briefs, Fact Sheets & Manuals

  • Twenty-Sixth Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act.  The 26th Annual Report to Congress is now available online. Volume 1 focuses on the children and students being served under IDEA and provides profiles of individual states' special education environment.
  • ADA Guide for Local Governments: Making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities.  One of the most important roles of local government is to protect their citizenry from harm, including helping people prepare for and respond to emergencies. Making these programs accessible is also required by the ADA.
  • Only Five States Screen Newborns For All 29 Core Disorders Recommended (March of Dimes Report).  While the number of newborn babies receiving screening tests has nearly doubled in the past year in the United States, only Iowa, Maryland, Mississippi, New Jersey, and Virginia administer all of the 29 tests recommended.  This means that only 9% of all newborns are screened for all of the conditions and more than four million babies born this year will not be screened for all treatable disorders.
  • Marking the Progress of IDEA Implementation (ABT Report).  The summary report captures the distinctive findings and their implications from a six-year study of state and local implementation and impact of the IDEA conducted for the US Department of Education's Office of Special Education Programs.  
  • NCWD Releases Mentoring Guide.  The creation of the Mentoring Guide is rooted in the U.S. Department of Labor's Office of Disability Employment Policy's (ODEP) charge to find and promote the most effective research-based policies and practices to improve transition outcomes for youth with disabilities.   Paving the Way to Work: A Guide to Career-Focused Mentoring for Youth with Disabilities has been developed by the NCWD/Youth to specifically address the needs of youth with disabilities during their transition from school to work.
  • Calculating the Costs of Family Caregiving (HCBS Report).  A new report, "MetLife Caregiving Cost Study: Productivity Losses to U.S. Business" estimates the costs associated with replacing employees, absenteeism, crisis in care, etc. to total $33.6 billion. A new online tool allows employers to estimate the financial impact of family caregiving responsibilities within their own businesses.
  • Money Follows the Person Initiatives of the Systems Change Grantees (Final Report).  This report highlights nine CMS Money Follows the Persons Grantees, with a focus on Texas and Wisconsin. The report describes the initiatives, and discusses policy and design factors states should consider when developing MFP programs, including developing legislation and budget mechanisms for making transfers of funds, assuring availability of services and housing, identifying potential consumers for transition, and monitoring and quality assurance.
  • Strategic Planning to Ensure Success for Students with Learning Disabilities (Brief).  This brief from the National Center for Learning Disabilities can help parents and teens understand the requirements and opportunities in the laws concerning transition from high school to college so that they can successfully plan for the future.

Various Resources

  • HCBS Checklist for Enhancing the Participation and Input of People with Disabilities. In many ways, consumers are the best experts on their disabling conditions, including their own needs for support and the effectiveness and quality of programs.  As a result, obtaining consumer participation and input at all stages of program design, implementation, evaluation and quality assurance are important. This checklist will help to enhance full participation.
  • Proyecto Visión Newsletter.  A bilingual newsletter for Latinos with disabilities.  Current issue includes the following: Training for employers in Manhattan; articles about one Texas family's experience with the impact of culture on disability, the power of inviting role models with disabilities in the classroom; Living with a mental illness in New York City; and the plight of disabled farm workers in Pennsylvania.
  • How the Coverage Gap works for People with Medicare Prescription Drug Plans (CMS Tip Sheet).  This resource is for partners who work with people with Medicare and contains several questions and answers related to the coverage gap. 
  • Bridging the Coverage Gap (CMS Publication).  Written for distribution to people with Medicare and includes information on ways people can avoid or delay entering the gap, and continue to save money on drug costs while in the gap.
  • Toolkit to Help Practitioners Assess the Needs of Family Caregivers.  The National Center on Caregiving at Family Caregiver Alliance (FCA) has developed a practical resource targeted to practitioners and program administrators interested in integrating caregiver assessment into their work with caregiving families, older people and adults with disabilities. 
  • Aging Update:  National Council on Aging (NCOA).  Founded in 1950, the National Council on Aging (NCOA) is dedicated to improving the health and independence of older persons and increasing their continuing contributions to communities, society, and future generations. This information has recently been updated and is available. 
  • Accommodating Nurses with Disabilities.  JAN's Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the ADA.
  • Best Practice Studies and Institutes: Findings from 20 States (NCEA Study).  After studying nearly 200 schools in 20 states, the National Center for Educational Accountability (NCEA) has released a study which helps to explain why some schools can help students reach higher standards while other, similarly situated schools cannot. NCEA used 3 years of performance data to identify average- and high-performing elementary, middle, and high schools in 20 states.
  • Reframing Child Abuse and Neglect: A Practical Toolkit.  The toolkit shares the theory behind the FrameWorks Institute's strategic frame analysis, key findings and recommendations from the research, as well as some of the obstacles advocates face in communicating about child abuse and neglect prevention. The toolkit contains practical information, materials and guidelines on how to best implement this research to increase public understanding of child abuse prevention.

New Websites

Interagency Coordinating Council (ICC) on Emergency Preparedness and Individuals with Disabilities.  The ICC's mission is to ensure that people with disabilities and their specific needs are fully integrated into all aspects of our nation's emergency management system; including mitigation, preparedness, response, and recovery.

Best Practices in Transnational Competence.  HRSA unveils this user-friendly site highlights approximately 40 HRSA-supported projects on the critical subject of serving ethnoculturally and socially diverse groups.

Study of State and Local Implementation and Impact of the Individuals with Disabilities Education Act (SLIIDEA).  SLIIDEA will examine how the Amendments of the IDEA of 1997 are being implemented by states, school districts, and schools.  In particular, it will address issues focused on student performance, access to the curriculum, behavioral supports, parental involvement, and transitions for young children to school and youth to adult life. 

Accessible Book Collection: Providing Digital Text to Persons with Disabilities.  This website is a collection of digital copies and e-books of age-appropriate reading materials for students reading below their grade level (these are often called high interest/low reading level materials).  Students are eligible to use the e-books if they have a documented disability that prevents them from reading standard print effectively, such as blindness, a visual impairment, learning disabilities, or dyslexia.

Benefits Assistance Resource Center (BARC).  The Benefits Assistance Resource Center (BARC) of Virginia Commonwealth University provides training and technical support to Benefits Planning, Assistance and Outreach (BPAO) projects and Protection and Advocacy for Beneficiaries of Social Security (PABSS) projects on the operations of the Social Security disability benefit programs (SSI and SSDI) and all associated work incentives. 

Right to Ride - Taxis for All.  Taxis for All - North America is a coalition to advocate for the widespread use of these accessible taxis, especially in areas where public transportation is limited.  If you would like more information about the advocacy strategies and development of this vehicle, please visit the website.

Colleges with Programs for Students with Learning Disabilities.  The colleges and universities listed on this Web page from the American Educational Guidance Center offer programs, some quite comprehensive, designed specifically to support students with learning disabilities.

 

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